Fibromyalgia

[Guest guest]

>

> Konnie thanks for your reply. My fms drugs, some of them have

opioid receptors, and that is a no no for using LDN. I have about

three and have to wean off them before taking the LDN. It is really

difficult at this point and I am considering whether to get on

Gabapentin instead, as it helps the pain a lot, and forget the LDN for

now.

>

Jan,

I'm still confused. Drugs do not have " receptors " . I'd be curious to

know just what drugs you are on. A list might be helpful. You can, I

believe, take LDN with Gabapentin.

Konnie

[Guest guest]

>

> Hi

>

> I hope I haven't replied to this before - I am pretty foggy today.

the opiod I was talking about is in my tramadol, for pain. It is the

mu receptor. Thankfully I dont have others that I thought I did. None

of my nite meds have them, Do you still take meds to sleep or does

the LDN take care of that?

>

> Thanks again for your reply

>

> Fibrofan

>

Well, that's not so bad, if the only thing you're taking that acts on

the mu-opioid receptors is tramadol. That is what I was taking before

I started on LDN, but because I had taken it for a very short time,

and in low doses, I was not dependent, so getting off it was no

problem. It didn't help my pain very much. It should, of course, be

decreased gradually, over a period of time. And you should not start

LDN until you've been completely off the tramadol for two weeks.

Short-term use of NSAIDS would help tide you over, for pain. None of

the OTC things, like Ibuprofen, ever worked for me, so I had a scrip

for Flurbiprofen for years. It worked pretty well, but, of course, it

also caused a gastritis in time. Now I take it only rarely.

LDN helps with so many more issues than tramadol does. Lifiting the

fog is reason enough for me to stay on it forever, but it also helps

my mood and energy , and it completely got rid or my dermatitis. The

psoriasis is almost gone, too.

I know how serious the sleep disorder can be with fibro, but for me it

is less persistent since starting on LDN. I do need considerable help,

still, and take a few supplements at bedtime, including 5-HTP,

Melatonin, St. 's wort, GABA, (the natural substance from which

Gabapentin is derived) and wash it all down with a magnesuim solution.

I use Gillham's Natural CALM magnesuim, one heaping teaspoonful,

with a pinch of stevia, in a glass of water. It all helps, especially

if I put on a CD of calming sounds, " OM " chants, Himalayan singing

bowls, Sufi healing music , etc. Use whatever suits yourself.

The issue of sleep disturbance attributed to LDN seems to me a bit

overblown. Maybe that is because I'm used to having sleep problems. It

does exist, undeniably, but, as the good Dr. Skip says, it can be

regarded as evidence that the LDN is working. It is not so bad. I did

have some pretty vivid, interesting dreams for awhile, and still wake

up in the middle of the night occasionally, but usually go right back

to sleep. Fear of loss of sleep should not deter one from trying LDN,

because there is so much benefit to be gained.

I hope this has been helpful.

Konnie

[Guest guest]

>

> Hi there everyone,

>

> I'm at a crossroads in my healing and need support to continue on

this rocky road. I am facing a diagnosis of fibromyalgia after a

normal gastroscopy for burning pain in esophagus. .

>

> Thanks for your support and any input you can provide.

>

> Heidi

>

>

[Guest guest]

> >

> > Hi there everyone,

> >

> > I'm at a crossroads in my healing and need support to continue on

> this rocky road. I am facing a diagnosis of fibromyalgia after a

> normal gastroscopy for burning pain in esophagus. .

> >

> > Thanks for your support and any input you can provide.

> >

> > Heidi

> >

> >

[Guest guest]

Hi Dudley,

Fibromyalgia is the latin term for " muscle pain " . Medical doctors

coined this term in the late 1980s when many of their patients were

complaining of generalized muscle pain throughout the body. It is

often accompanied by another " disease " Chronic Fatigue Syndroms -

which is being tired all the time. Both are just fancy terms for the

symptoms people are experiencing.

These conditions are both caused by toxins in the body. These toxins

are often produced by candida but can also include environmental

toxins and heavy metal toxins.

Hope that helps!

>

>

> Hi susan,

> what is fibromyalgia what are the symptoms

>

> Dudley

>

[Guest guest]

Hi Heidi,

I was diagnosed with fibromyalgia about a year ago. I've only been on

Bee's diet for 10 days but my fibro pain is mostly gone. Of course, I

have other symptoms of die off, and they are difficult to endure. I

don't know how long you've been on the program but perhaps because of

our similar diagnosis we could help each other along through the tough

times of die off symptoms?

After doing a lot of research on Fibromyalgia and experiencing all the

difficult symptoms over the past year, I think this program could be

the best way to go for me. I also had very bad burning pain, but it

was in my duodenum (upper stomach on right side) near the opening to

my esophagus. I think it was the electrolyte drink that stopped the

burning pain, not sure, maybe it could have been the coconut oil.

How long have you been on the program?

Tamra

> >

> > Hi there everyone,

> >

> > I'm at a crossroads in my healing and need support to continue on

> this rocky road. I am facing a diagnosis of fibromyalgia after a

> normal gastroscopy for burning pain in esophagus. .

> >

> > Thanks for your support and any input you can provide.

> >

> > Heidi

[Guest guest]

> > >

> > > Hi there everyone,

> > >

> > > I'm at a crossroads in my healing and need support to continue

on

> > this rocky road. I am facing a diagnosis of fibromyalgia after a

> > normal gastroscopy for burning pain in esophagus. .

> > >

> > > Thanks for your support and any input you can provide.

> > >

> > > Heidi

> > >

> > >

[Guest guest]

>

> Hi susan,

> what is fibromyalgia what are the symptoms>

> Dudley

+++Hi Dudley. May I please ask that you " trim your messages " before

posting them on the group? You were emailed the instructions when you

joined, and they are also posted on the Group every 2 weeks - there was

one posted this past week - so do a Message Search to find it.

Thanks a bunch, Bee

[Guest guest]

>

Tamra, you wrote this to Heidi:

>>I also had very bad burning pain, but it was in my duodenum (upper

stomach on right side) near the opening to my esophagus. I think it

was the electrolyte drink that stopped the burning pain, not sure,

maybe it could have been the coconut oil.

+++Just so you know, the area you describe is not called the

duodenum. The duodenum is the first part of the small intestines.

Also your esophagus is in the middle of your chest, just under your

breast bone.

I recommend you look up body anatomy images so you can identify the

areas correctly.

The best, Bee

[Guest guest]

Hi Fibberjan

There are 2 entries in the database with Fibromyalgia www.ldn-database.carnebeach.com and go to All Other's and then database

Regards Life is for sharing so please fill in the database at http://ldn-database.carnebeach.com and share your experience to help others learn about LDN

[low dose naltrexone] Fibromyalgia

Anyone using LDN for Fibromyalgia? I am wondering how it has worked for that illness.

[Guest guest]

I'm taking LDN for fibromyalgia and so far I've found that I'm sleeping much

better and deeper. I don't think LDN is going to work quickly with me and that

it will be a gradual improvement. I've been taking it since the end of January

and I've been on 4.5 mg for 4 weeks now.

Jan

[Guest guest]

For those who may suffer from fibromyalgia, and like to do some reading, I would

recommend the book " From Fatigued To Fantastic " by Dr. Teitelbaum, who as

a result of suffering with fibro himself, became a specialist in treating it.

It's a well-written book, siutable for both patients and doctors alike.

 

Don

in Boston

[Guest guest]

There is no " test " for fibro. It's another one of those diseases whose

diagnosis depends on symptoms.

Joanna Hoelscher

[Guest guest]

Don - Thank you for that info. I have a sister with fibro and I think she would

enjoy reading that.

<<For those who may suffer from fibromyalgia, and like to do some reading, I

would recommend the book " From Fatigued To Fantastic " by Dr. Teitelbaum,

who as a result of suffering with fibro himself, became a specialist in treating

it.>>>

[Guest guest]

yeh.... I have had Juvenile Fibro since 10ish even though only one doctor

recognized it as such and the other doctors denied its possibility at the

time. When I got a good pediatric rheumy, she said the JRA and Fibro are

there. Interestingly, I learned latter that this ped rheumy did not believe

in Fibro until having me as a patient. I'm not sure what it is about my case

that changed her mind but glad it did...

My biggest lifelong issues I had from fibro were the terrible horrid sleep

issues, fibro pain/tenderness beyond that of JRA...i just hurt in my muscles

and joints and the antinflamatories did not help this pain. I was also tired

all of the time even with JRA was fine and around my tender points, I also

have trigger points where you can litteraly feel taut bands and knots under

the muscles. some like peas and others kinda like marbles in size... they

are VERY painful to the touch and can be massaged out through 'myofascial

release' but it's not so pleasent. Now I know SOME people with fibro have

the knots and not others. I'm not sure why... I was diagnosed latter with

MPS as well myofascial pain syndrome however rhumatologist don't often

recognize this and it ws a pain specialist that said I had that. According

to the reading and research I do, it feels to me that FMS and MPS are along

the same continium because i don't see much difference between them all but

anyways.

If your daughter is having pain all over not just in school... I would think

something else is going on, espescialy if she is having problems sleeping.

One of the main issues with juvenile and regular fibro is the lack of whats

called NON- restoritive sleep.... we don't get the amount of REM sleep

necessary to assist with healing and this tends to lead to achiness, pain

and chornic tiredness. In fact, there was a study done with medical students

who are chronically sleep deprived and they had nearly all the same tender

points that those with Fibro would have due to the constant disruption and

lack of sleep they were getting. With people in our situation though, we

can't just go back to bed and grab our restoritive sleep so it becomes a

chronic issue.

Anyways, it's also common that children don't have as many tender points as

adults do according to Dr Muhammed... urgh, can't spell his name and I can't

recall it but if you google Juvenile FIbro, you will run into his studies

because he is one of the few that focused on the existance of Juvenile

Fibromyalgia as many doctors don't realize or recognize that children do get

it or that there can be a difference in presentation of it.

I hope your daughter does NOT have it but if she does, I can say, it is VERY

common to have fibro secondary to other rheumatic conditions unfortunately

and there are different things that can help some.

Issadora

On Fri, Mar 27, 2009 at 8:37 AM, Amy Hendrickson

<ahendrickson68@...>wrote:

> Does anyone have experience with juvenile fibromyalgia as a secondary

> condition to jra? Lucy complains of pain all over, and not just in her

> joints. I talked with an aunt this week who has a daughter and

> granddaughter (not a blood relation) with jra and fibromyalgia and it made

> me start thinking. I looked up the 18 pressure points and Lucy is very

> tender on at least 10 points. When she goes to school, I often get calls

> that she is in the nurse's office and that she is complaining of pain all

> over. We have all thought that she just wants to come home from school, but

> now I wonder if there is something more going on.

>

> Amy and Lucy, 7 poly

>

>

[Guest guest]

Hi Issadora,

Thanks for all the info. Lucy does complain of pain in her legs a lot, and

in her arms. She says she aches all over. And it's funny because

shedoesn't complain of arthritis pain very often. She just starts limping

or stops writing and then when I ask her if she is hurting she says yes.

She just turned 7 and from what I've learned, at this age, kids are still

not very good at articulating pain. But she does tell me about the arm and

leg pain. And about the sleep... I wish there was a way to know how she is

sleeping. She is definitely the hardest of my kids to wake up on a school

day. I've put that down to the arthritis though. She frequently wants me

to come lie down with her during the day, but again I've figured that's her

way of expressing when she's feeling bad. She never sleeps during the day.

She is the most cheerful child. She rarely complains. When she does, she

is likely to skip up to me, tell me her leg hurts and skip off.

We went to see an aunt and uncle of my husband this week. His aunt has a

child and a grandchild with jra (no blood relation). After we left, Lucy

said that she was so happy to know other people with jra, that it made her

feel better to know that it ran in the family. I guess it made her feel not

so alone. I didn't tell her that they weren't related.

We have a rheumy appt. on the 13th. I'll bring up my concerns then.

Amy

On Fri, Mar 27, 2009 at 8:22 PM, Issadora <FlyfreeIzzie@...> wrote:

> yeh.... I have had Juvenile Fibro since 10ish even though only one

> doctor

> recognized it as such and the other doctors denied its possibility at the

> time. When I got a good pediatric rheumy, she said the JRA and Fibro are

> there. Interestingly, I learned latter that this ped rheumy did not believe

> in Fibro until having me as a patient. I'm not sure what it is about my

> case

> that changed her mind but glad it did...

>

> My biggest lifelong issues I had from fibro were the terrible horrid sleep

> issues, fibro pain/tenderness beyond that of JRA...i just hurt in my

> muscles

> and joints and the antinflamatories did not help this pain. I was also

> tired

> all of the time even with JRA was fine and around my tender points, I also

> have trigger points where you can litteraly feel taut bands and knots under

> the muscles. some like peas and others kinda like marbles in size... they

> are VERY painful to the touch and can be massaged out through 'myofascial

> release' but it's not so pleasent. Now I know SOME people with fibro have

> the knots and not others. I'm not sure why... I was diagnosed latter with

> MPS as well myofascial pain syndrome however rhumatologist don't often

> recognize this and it ws a pain specialist that said I had that. According

> to the reading and research I do, it feels to me that FMS and MPS are along

> the same continium because i don't see much difference between them all but

> anyways.

>

> If your daughter is having pain all over not just in school... I would

> think

> something else is going on, espescialy if she is having problems sleeping.

> One of the main issues with juvenile and regular fibro is the lack of whats

> called NON- restoritive sleep.... we don't get the amount of REM sleep

> necessary to assist with healing and this tends to lead to achiness, pain

> and chornic tiredness. In fact, there was a study done with medical

> students

> who are chronically sleep deprived and they had nearly all the same tender

> points that those with Fibro would have due to the constant disruption and

> lack of sleep they were getting. With people in our situation though, we

> can't just go back to bed and grab our restoritive sleep so it becomes a

> chronic issue.

>

> Anyways, it's also common that children don't have as many tender points as

> adults do according to Dr Muhammed... urgh, can't spell his name and I

> can't

> recall it but if you google Juvenile FIbro, you will run into his studies

> because he is one of the few that focused on the existance of Juvenile

> Fibromyalgia as many doctors don't realize or recognize that children do

> get

> it or that there can be a difference in presentation of it.

>

> I hope your daughter does NOT have it but if she does, I can say, it is

> VERY

> common to have fibro secondary to other rheumatic conditions unfortunately

> and there are different things that can help some.

>

> Issadora

>

> On Fri, Mar 27, 2009 at 8:37 AM, Amy Hendrickson

> <ahendrickson68@... <ahendrickson68%40gmail.com>>wrote:

>

>

> > Does anyone have experience with juvenile fibromyalgia as a secondary

> > condition to jra? Lucy complains of pain all over, and not just in her

> > joints. I talked with an aunt this week who has a daughter and

> > granddaughter (not a blood relation) with jra and fibromyalgia and it

> made

> > me start thinking. I looked up the 18 pressure points and Lucy is very

> > tender on at least 10 points. When she goes to school, I often get calls

> > that she is in the nurse's office and that she is complaining of pain all

> > over. We have all thought that she just wants to come home from school,

> but

> > now I wonder if there is something more going on.

> >

> > Amy and Lucy, 7 poly

> >

> >

[Guest guest]

this is the LDN Group for LDN, not fibromyalgia. FMS is just one of the issues one can take LDN for.

[low dose naltrexone] Fibromyalgia

When I joined the group I signed in as "Digest" for fibromyalgia. Now I seem to be getting everything but that. Dont know what I did - any ideas as to how to fix it??

Fibrofan

jmn@...

[Guest guest]

Fibrofan

Perhaps you do not understand that DIGEST mode includes all messages totalling 25 messages per Digest. You cannot subscribe to a sub-set of just messages on FMS. But, there is another group focused on CFIDS.... very similar. LDNForCFS

mjh14 low dose Naltrexone (LDN) groups:low dose naltrexone, ldnsupport, LDN_Users, Spotlight_LDN, Autism_LDN, LDN_4_cancer, LDN_HIVAIDS, LDN-for-PLS-HSP, ldn_pandilla, pandilla_ldn, Ldnbrasil, LDNForCFS, ldnmidwest, Naltrexonabajadosisldn ================

Posted by: "Jan Goodale" jmn@... fibrofan

Tue Mar 31, 2009 1:46 pm (PDT)

When I joined the group I signed in as "Digest" for fibromyalgia. Now I seem to be getting everything but that. Dont know what I did - any ideas as to how to fix it??Fibrofanjmn@... A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

>

> When I joined the group I signed in as " Digest " for fibromyalgia. Now I seem

to be getting everything but that. Dont know what I did - any ideas as to how

to fix it??

>

> Fibrofan

> jmn@...

>===============

Go to the LDN homepage, sign in with username and password you registered with

and click Edit Membership, make choices and save choices.

[Guest guest]

yes

>

> Has anyone had any good results with LDN for Fibromyalgia?

>

[Guest guest]

There is a LDN for Fibromyalgia group, I am copying their email

/ link on this and hopefully you will find some help there.

Thanks,

Jayne

www.ldnnow.com

<- please click on petition link

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of terriperez58

Sent: 04 August 2009 21:26

low dose naltrexone

Subject: [low dose naltrexone] Fibromyalgia

Has anyone had any good results with LDN for

Fibromyalgia?

[Guest guest]

Yes!

Tamra in Gilroy

Day 67 - Stanford Phase II LDN for Fibromyalgia Clinical Trial

>

> Has anyone had any good results with LDN for Fibromyalgia?

>

[Guest guest]

Hi Judi

I have a diagnosis of FMS and have had good success with LDN. I've been taking it now for well over two years.

There is also a very good group focused on using LDN for FMS. The group's owner has done an excellent service by making a number of files of helpful informationfor those with FMS.

Join here LDNforFibro-subscribe

mjh

www.ldn-help.com

Posted by: "judi523" judi523@... judi523

Sat Oct 24, 2009 7:06 am (PDT)

I have been suffering with relapsing and remitting episodes of general weakness and disabillityat one time I was wheelchair bound but was able to get back on my feet with the help of steroids, the initial diadnosis was MS, but after 25 years the doctors shanged there opinion to fibromyalgia, but I am getting very worried as I am loosing the strenth in my armsAs I have only just found out about this treatment, can anybody tell my about this treament and fibromyalgia? I am also over wieght due to underactive thyroid and am taking thyroxine.many thanks,in advance. I live in Wales,UK so I wish to have as much knowlege as possibl befoe asking him for a presciptiomJudi

[Guest guest]

there is a good doctor in wales that is familiar with ldn

Dr M R Lawrence UK Wales 10 Heol Gerrig Treboeth Swansea West Glamorgan SA5 9BP

+44 (0) 1792 417 514 bob.lawrence@...

he might be able to help you.fibro is one of the subject that was researched

with ldn.

http://snapl.stanford.edu/research/ldn.html

here you can read the experience of few fibro patients.

https://ldndatabase.dabbledb.com/page/other/JLUSSfzV#

probably your thyroid is not treated corectly like all the english who do not

use armour thyroid or similar medicatin.that should have solved at least part of

your fibro problems.

>

> I have been suffering with relapsing and remitting episodes of general

weakness and disabillity

> at one time I was wheelchair bound but was able to get back on my feet with

the help of steroids, the initial diadnosis was MS, but after 25 years the

doctors shanged there opinion to fibromyalgia, but I am getting very worried as

I am loosing the strenth in my arms

>

> As I have only just found out about this treatment, can anybody tell my about

this treament and fibromyalgia? I am also over wieght due to underactive thyroid

and am taking thyroxine.

>

> many thanks,in advance. I live in Wales,UK so I wish to have as much knowlege

as possibl befoe asking him for a presciptiom

>

> Judi

>

[Guest guest]

You are welcome to also join the LDN group for people with Fibromyalgia. The group address is below my signature.

Judy HTo better health through knowledgeStarted taking LDN on 1/21/2009 for Fibromyalgia, Hypothyroid, PCOS and Restless Legs SyndromeLDNforFibro/

I have been suffering with relapsing and remitting episodes of general weakness and disabillityat one time I was wheelchair bound but was able to get back on my feet with the help of steroids, the initial diadnosis was MS, but after 25 years the doctors shanged there opinion to fibromyalgia, but I am getting very worried as I am loosing the strenth in my armsAs I have only just found out about this treatment, can anybody tell my about this treament and fibromyalgia? I am also over wieght due to underactive thyroid and am taking thyroxine.many thanks,in advance. I live in Wales,UK so I wish to have as much knowlege as possibl befoe asking him for a presciptiomJudi