Re: Has anyone tried this for fibromyalgia - sleeping

[Guest guest]

Sorry for the last empty email. I hit enter and it just sent before I

wrote anything. Very weird.

Have you asked what the side effects are? How does it work? What is

it exactly? How much does it cost? I have never used drugs myself but

my way of getting to sleep was pretty pricey to start with but at

least had no side effects. Fibromyalgia is largely a result of too

many toxins in the body and adding drugs is rarely beneficial.

I started sleeping and therefore healing when I bought a magnetic

sleep system. It puts your body into the delta level of sleep for

four times longer than normal. Your body heals four times faster than

normal since sleep is the only time it can do so.

If you like, you can write me personally and I can send you my detox

protocol.

Hope this helps,

Sharon

hotmocha@...

>

> The doctor suggested I try a drug for Parkinsons called

> pramipexole (Miramax) for sleeping. Says it attaches to the

dopamine

> receptor sites and calms your body down at night and allows you to

get

> a deeper sleep? Wondering if anyone has tried it?

> Carol

>

[Guest guest]

I did try it and had a very adverse reaction, but I also have spinal

compression, which, according to a doctor who performed a study on it (Dr.

Holman) makes it not work (he noted this effect, but hasn't been able to explain

it, as far as I know). After 2 weeks, the migraines, level 10 pain in my legs

and back, and insomnia did not abate so I discontinued it.

However, I have heard from others that it helped them tremendously.

So I say it's worth a try, although I would get just a portion of the Rx, and

if you do okay on it, get the rest of the prescription filled. I wasted $$ on

this drug, and wish I had thought to try it out for a couple of weeks first

before committing to an entire month's worth (you start at a low dose and build

up, per my pain mgmt guy, so the last 2 weeks were the really pricey ones).

Hoping for good things for you from this,

Kelli

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

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[Guest guest]

Hi Carol:-

My physician has me on pramipexole. I use it mainly because I also have

restless leg syndrome along with my fibromyalgia. Just using medication for my

RLS didn't work to give me restful sleep. Since being on the pramipexole, it

relaxes my body from the twitches and restlessness and thus helps me get more

restful sleep. It is great for helping to 'relax' the muscles and nerve

impulses to the muscles, thus it helps Parkinson patients to relax the tremors.

The one side effect is you are drowsy, but that helps you to sleep. While you

get used to the medication, you will feel tired during the day for about a week

or two, then your body adjusts to it. You will have to decide if it is

something that is a benefit and does the benefit of taking a medication outweigh

any of the side effects. Good luck.

Deb

[Guest guest]

Sharon, Did you really say this??

Fibromyalgia is largely a result of too

> many toxins in the body and adding drugs is rarely beneficial.

>

Fibro is largely genetic from what I've been told. My mother has it

bad and doesn't take medication or been anywhere to be loaded with

toxins. From what I have read and been told..........that is the

first time I've every seen anyone say it's from Toxins. I know that

it's typical for some of us with this altered ammune

disfunction...that toxins were the trigger. This is not for all by

any means. Others can be the flu etc... Fibro is also grouped

inflamatory response illnesses that are not traced back to toxins.

Just puzzled...

/Dutchie

>

>

>

>

> >

> > The doctor suggested I try a drug for Parkinsons called

> > pramipexole (Miramax) for sleeping. Says it attaches to the

> dopamine

> > receptor sites and calms your body down at night and allows you to

> get

> > a deeper sleep? Wondering if anyone has tried it?

> > Carol

> >

>

[Guest guest]

Hi Kelli,

My Psychiatrist (who is well versed in treating ME/CFIDS where my M.D.

was not) always gives me samples for getting established. Maybe ask

him if he has samples in the future? They don't always think of what

they might have...could be very useful in your case!

God Bless!

> I did try it and had a very adverse reaction, but I also have spinal

compression, which, according to a doctor who performed a study on it

(Dr. Holman) makes it not work (he noted this effect, but hasn't been

able to explain it, as far as I know). After 2 weeks, the migraines,

level 10 pain in my legs and back, and insomnia did not abate so I

discontinued it.

>

> However, I have heard from others that it helped them tremendously.

>

[Guest guest]

Hi,

My Doctor has me on lunesta for sleep and requip for the body jerks

(requip is not helping) I have gone from restless legs to body jerks

to parkenson like tremors. Restless leg usually hit when I was in

relaxed state like tryin to go to sleep but now it's around the clock.

I'm wondering if this is a progression of restless leg syndrome if

not treated properly or if it's just another problem that I have

developed. I have been diagnosed with ME/CFIDS/FIBRO, I know I got

off the subject a little bit here...but sometimes it's nice to know

what others are being prescribed and if it works for them.

God Bless,

> Hi Carol:-

> My physician has me on pramipexole. I use it mainly because I

also have restless leg syndrome along with my fibromyalgia. Just

using medication for my RLS didn't work to give me restful sleep.

Since being on the pramipexole, it relaxes my body from the twitches

and restlessness and thus helps me get more restful sleep. It is

great for helping to 'relax' the muscles and nerve impulses to the

muscles, thus it helps Parkinson patients to relax the tremors. The

one side effect is you are drowsy, but that helps you to sleep. While

you get used to the medication, you will feel tired during the day for

about a week or two, then your body adjusts to it. You will have to

decide if it is something that is a benefit and does the benefit of

taking a medication outweigh any of the side effects. Good luck.

>

> Deb

>

[Guest guest]

/Sharon,

I completely have overcome all symptoms with fibro/cfs for 5 years now through

nutrition and lowering my toxic load.

In my personal experience of overcoming this I had to mostly focus on the

unconventional detrimental environmental factors that effect health. In my

experience conventional pharmaceutical treatments and or therapy address social

environments, stress, the mind with drugs, or a patient's illness belief system

which is certainly part of the equation. But I have learned through research and

experience there are many other factors and co-factors involved in that process.

I learned many years ago how vulnerable I am too many environmental toxins.

Through that journey I learned it's just common sense malnutrition and what are

toxic exposures to me caused biochemical imbalances that depressed my immune

systm. Also I have personally experienced how detrimental nutritional and

environmental factors (toxins) also directly influence my mind with behavior

distortions that influence depression.which in itself, as I have experienced,

changes the state of the whole body.by working through the central nervous

system.the endocrine system and the immune system and you end up with CFS

None of this I have learned professionally, and the results of my personal

success do not fit into the conventional realm of thinking.

So I wrote about it to help others.

McMaster University: http://vcdtrn.mcmaster.ca/links.html

National Network of Mental Health:

http://www.nnmh.ca/Member_Submissions/A_guide_in_illness_prevention_+_%20unconve\

ntional_treatment_updated.pdf

Jeff Chiacchieri

[Guest guest]

, Yes, I really did say this! It's my personal experience

that everyone I've ever met who got rid of their fibromyalgia did it

by detoxifying their bodies and replacing the missing nutrients.

Mercury is a big factor in causing candida which leads to other

problems. A body full of toxins and acid waste doesn't sleep well

either. Without proper sleep, there can't be healing. It's a

vicious circle.

When the body is clean of toxins, it will not react to viruses and

bacteria, nor can inflammation occur except perhaps quite

temporarily while a new infection enters the body. It will leave

quickly when there are no toxins to deal with. I work very hard on

keeping toxin-free and research constantly for the easiest ways to

do so.

Genes play a part. There are 4 genetic types when it comes to

detoxifying. Some people can smoke, drink and party with no ill

effect and some people just breathe the air and they get sick. It's

a matter of how well the body is capable of detoxifying. This is

sort of how an environmental illness doc in Germany explained it to

me. She did some very expensive gene testing and then did immune

therapy to fix it according to genetic type. We didn't do the

testing but I learned a lot from her regarding mercury and

detoxification which led to further study.

I also think that besides genes, we inherit our lifestyle. If we

grow up on junk food, chances are that's what we'll feed ourselves

and our family. If we grow up vegetarian, we're unlikely to start

eating meat as a grownup. Sort of like smokers usually have parents

who are smokers, etc.

I have to run now but if you're interested I can post more about

some ways to detoxify the body most effectively when I have some

time. Probably I've mentioned some things in my previous posts.

Sharon

[Guest guest]

Hi,

My Doc has me trying Cymbalta which is a combo SSRI & norepinephrine , I was

told that it would not only help with the depression but also with the aches

& pains that are associated with fibro, etc. He said it would help with

sleep- however I still need a sleep aide which for me is Ambien. Has anyone

tried Cymbalta?

What results did you have? I'm still in the 'trial' phase' as it's only

been 4 days.

Hope this helps,

Peace to all,

Debbi

[Guest guest]

Sharon, I am very interested in detoxifying. I could use a lot of guidance!

Debbie

[Guest guest]

Humm I have done enough research and in my own situation have learned

that toxins are or can be the only key into a person falling into this

trap of illness. My point is (if this is what your referring to as I

have no idea otherwise) Toxins are not the ONLY way, there is so much

being discovered everyday with other triggers to the point they

consider it a hit or miss for some.

I am very happy you were able to completely overcome your symptoms but

realise that not everyone is or will ever be exactly like you. Many

never get a grasp on it even if they shadowed everything you did for

yourself. There is not one single cause for this therefore there is

not one single cure either. My concern is when anyone tells another

that this illness is due from " toxins " and medication doesn't help

anything...I beg to differ. For some of us it is the only relief we

have at all. Nothing is " Always " . I continue to gleen what I can

from others and their experiences with this and sucess storys of what

has helped them. Some things help...others don't. We need to be

careful when speaking to discern what has been only our experience

verses the facts. Thanks so much for posting and I am truely happy

you are doing so much better and it's been a whole 5 yrs! Praise God!

God Bless

> /Sharon,

> I completely have overcome all symptoms with fibro/cfs for 5 years

now through nutrition and lowering my toxic load.

> In my personal experience of overcoming this I had to mostly focus

on the unconventional detrimental environmental factors that effect

health. In my experience conventional pharmaceutical treatments and or

therapy address social environments, stress, the mind with drugs, or a

patient's illness belief system which is certainly part of the

equation. But I have learned through research and experience there are

many other factors and co-factors involved in that process. I learned

many years ago how vulnerable I am too many environmental toxins.

Through that journey I learned it's just common sense malnutrition and

what are toxic exposures to me caused biochemical imbalances that

depressed my immune systm.

[Guest guest]

Sharon,

Thanks for your post, I read that three times and had to clarify what

I understood you to say. Of course all that you have posted here is

absolutely true but then again it seems to be several things

compounded that pushes our ammune systems over the edge. I have

wondered about the Metals as I worked with open mercury for many years

before they knew just how deadly it was.

I guess my point was taken to the comment that Medicines don't help. I

know many of us don't have the money to run out to health food store

so that everything we consume is less toxic or buy all that has been

even considered on this forum to be taken instead of medicine. Even

if you could..you still have the world to deal with. I spent very

good money on detoxing first thing that I did for 3 months straight

and have noticed absolutely no differences at all. Changed to Palm

oil and other changes in hopes of gaining some ground.

We had one person posting against Doctors and against anything but

detox as if that would take care of all of it. I say, some things

cause damage that cannot be reversed and the best thing you can do is

try and treat the symptoms to grab what quality of life you can get. I

know there is no magic bullet and sometimes I get frustrated with the

whole subject as I try and deceifer all the claims out there.

I so do appreciate your understanding and your researched knowlege

with regard to this illness. With my foggy brain I had to be sure I

understood what your saying. Meds can and do help with symptoms but

then again it is very specific to what is being treated, personal

situation (can be vastly different from one to another) at least

temporarily until someone like " ME " can get to where I am awake long

enough to persue healthier options. I'm sure I'm not alone. Wholistic

treatment is by far better than a chemical one....if you can do it.

Thanks again Sharon,

God Bless...

> , Yes, I really did say this! It's my personal experience

> that everyone I've ever met who got rid of their fibromyalgia did it

> by detoxifying their bodies and replacing the missing nutrients.

> Mercury is a big factor in causing candida which leads to other

> problems. A body full of toxins and acid waste doesn't sleep well

> either. Without proper sleep, there can't be healing. It's a

> vicious circle.

[Guest guest]

Hi Debbi,

I used to be on Cymbalta, but it didn't work for me. Of course, with our

situation, something that works for some doesn't work for others. I never felt

the relief from the pain at all and had some side effects (nausea, vertigo) so I

went back to Lexipro for the depression and darvocet and soma for the pain and

muscle tightness. I would try it for a couple of weeks and see if you notice a

difference, mabe you could get samples until you know if it works for you. Good

luck and God Bless,

[Guest guest]

Jeff,

This is great! This is exactly what I was getting at in my original

post. Chemicals and toxins needs to be avoided. Of course we still

need to eat, breath and drink water so it's pretty much impossible

to avoid everything but we can eat organic produce and thereby

increase our vitamins and minerals by about 600% over regular

produce (eat less and have more value from food). You're absolutely

right and living proof that malnutrition is a factor. Organic is

not a luxury, it's a necessity when you have CF or FMS. Chewing

well will also contribute to more enzymes forming that help with

digestion and therefore more available nutrients. Chew 30-40 times

per mouthful. Yes you might fall asleep while eating! Ha, ha!

Stress can easily be overcome with EFT. This won't cost a penny if

you learn it yourself: www.emofree.com. Toxins affect the brain and

cause depression. So does a lack of amino acids.

I did about 14 NAET treatments to eliminate allergies and

environmental sensitivities. Even if you can't afford to do them

regularily, they don't reverse so you can do them as you can afford

it. Do one a month. It will take longer but better late than never.

It would be nice if you could post more details for everyone.

Sharon

[Guest guest]

Hi Debbie,

I am on Cymbalta and have noticed some improvement since I started

on it. It took a couple weeks for full effects in my case. I also

have suffered for years of degenerative bone disease (since age 23)

and have another back surgery to have done yet so I am used to a

high level of pain. With Cymbalta, I have noticed a reduction of the

pain and many times I forget to take my maintenience dose of pain

medicine (which I'm happy to report)

I have the typical complaints with sleeping also and Lunesta is what

I've been given but still have some problems. My Doctor starts low

and alters dosage from there so I expect we will be increasing that.

I have had a few really good days where I hardly think there is

anything wrong with me and am able to actually get things done where

I couldn't do anything but for very short periods of time.

I hope you benifit as I have and continue to feel better!

God Bless,

[Guest guest]

Quote:

" Organic is not a luxury, it's a necessity when you have CF or FMS. "

It sure is where I live! Not to belabor this fact as it's been

walked over again but it's common sense that if you can eliminate

the bad and increase the good (healthy options) that is the way to

go whenever possible.

Now, having said that I ask again not to assume that everyone has

access to things that you do such as organic much less the other

things you mentioned but failed to list all the individual costs. I

think that you were even able to do all these things means you

either had help or you were clear minded enough to do it yourself. I

personally know of several on this board that do not have the

financial ability to do what your stating if they could physically

get out to do it!

Keep sharing those things you have done that have worked for you but

like Jeff said that it was his experience that he shares with us,

not what he read or heard about. Not all things work for all people.

God Bless,

[Guest guest]

Sharon,

Thanks for the complement on the guide. As far as posts I will try when I get

more time, I have gone back to university and am working. I spent a year writing

that guide to help others find out/overcome what I did.CFS/FM took 15yrs away

from me and I am trying to make up for lost time. Whenever I would get hard to

understand or conflicting info, as a rule I learned to follow the money, then

the common sense eventually shows itself through the fog. Here are the links

again for anyone interested.

McMaster University: http://vcdtrn.mcmaster.ca/links.html

National Network of Mental Health:

http://www.nnmh.ca/Member_Submissions/A_guide_in_illness_prevention_+_%20unconve\

ntional_treatment_updated.pdf

Best,

Jeff