Fibromyalgia

[Guest guest]

Angie,

I too have both RA and fibro. I can't say that there is anything special my

rheumy has told me specifically helps fibro but I find it worse when it is humid

and during change of seasons. We purchased a jacuzzi and that seems to help me

feel better. When the fibro acts up all I want to do is sleep - sometimes I

just have to give in. Problem with having RA and fibro is separating the

two-joints ache from ra and muscles from fibro. I try to get enough rest and

eat right. Sorry I can't be more help but just know you are not alone!

NAncy

along302003 <along3@...> wrote:

I was wondering if anyone has fibromyalgia. I have been

diagnosed with RA and the the rheumy thinks I probably have fibro

too I was wondering what treatments you do He says that is why I

feel so bad still I hope to learn all I can about the fibro YOu

guys helped me greatly with the RA I really appreciate everything

Thanks for all information you can give me

Thanks

Angie

[Guest guest]

,

Thanks for letting me know I am not alone. I understand what you

mean about having trouble separating joint pain and muscle pain I

kept on thinking it was my joints but after my appointment yesterday

talking to the doctor and thinking about it i can recall some of it

has been muscles instead of joints Thanks again unfortuntly the

jacuzzi isn't a option for me can't afoord it

Thanks

Angie

>

> I was wondering if anyone has fibromyalgia. I have been

> diagnosed with RA and the the rheumy thinks I probably have fibro

> too I was wondering what treatments you do He says that is why

I

> feel so bad still I hope to learn all I can about the fibro YOu

> guys helped me greatly with the RA I really appreciate

everything

> Thanks for all information you can give me

>

> Thanks

> Angie

>

>

>

>

>

>

[Guest guest]

Hi Angie:

Sorry to hear of your diagnosis but you have come to

the right place for understanding and advise.......I

have both and I do find it hard to distinguish which

is giving me the pain..........the are so closely

related........the fatigue never seems to go

away...some days are better than others but it is

always there for me........I think exercise is good

when and if you can do it.......and I do believe the

changing of the weather is harder on me than

others....I hate to get out of the hot shower in the

morning so I too wish i could afford the hot tub......

Anyway please know others know what you are going

thru......Hang in there

Pat in So Ore.

--- " M. " <neproper@...> wrote:

> Angie,

> I too have both RA and fibro. I can't say that

> there is anything special my rheumy has told me

> specifically helps fibro but I find it worse when it

> is humid and during change of seasons. We purchased

> a jacuzzi and that seems to help me feel better.

> When the fibro acts up all I want to do is sleep -

> sometimes I just have to give in. Problem with

> having RA and fibro is separating the two-joints

> ache from ra and muscles from fibro. I try to get

> enough rest and eat right. Sorry I can't be more

> help but just know you are not alone!

> NAncy

>

> along302003 <along3@...> wrote:

>

> I was wondering if anyone has fibromyalgia. I

> have been

> diagnosed with RA and the the rheumy thinks I

> probably have fibro

> too I was wondering what treatments you do He

> says that is why I

> feel so bad still I hope to learn all I can about

> the fibro YOu

> guys helped me greatly with the RA I really

> appreciate everything

> Thanks for all information you can give me

>

> Thanks

> Angie

>

>

>

>

>

>

[Guest guest]

I have fibro but don't have a definite diagnosis for the RA yet. I was

diagnosed with fibromyalgia about 12 years ago. Some doctors that I've seen

since that time won't even acknowledge that it exists. It has been very

frustrating. It was sort of weird... I was almost relieved initially when

told I have arthritis because everyone knows that it is real and causes pain

I feel like I'm finally being taken seriously.

Darlene

[Guest guest]

Rogene, it was to my understanding, that fibro is not defined as an auto immnue illness. Have that changed that? Its still considered a syndrome?

>From: Rogene S <saxony01@...> >Reply- > >Subject: Fibromyalgia >Date: Wed, 13 Apr 2005 22:35:43 -0700 (PDT) > > >Just a bit of info on Fibromyalgia. > >FM is a syndrome, not a disease. A syndrome is a >collection of symptoms that have enough in common to >be given a name. > >A sleep disorder goes hand and glove with FM. . . In >one study, the found that they could cause FM in >anyone by depriving them of sleep. However, after >catching up on their sleep, some people KEPT the FM >symptoms, where others became symptom free. > >FM frequently begins after a major life stressor. . . >An accident, and illness, or stress like that caused >by a family death. > >IMHO . . . what these have in common is that all of >these can cause one to lose sleep! > >FM is diagnosed by pain in 11 of 18 pressure points on >the body. These points are where muscles come together >to connect to the bone. > >With FM, the membrane that covers the muscle becomes >very tight. . . This causes the muscle to pull agains >the joints and feels like joint pain. > >Treatment needs to be multi-faceted. . Getting >sufficient deep sleep is essential! . . . There are a >number of methods to try . . . relaxation techniques, >hot baths, Sleep Time tea . . . on a temporary basis, >Melatonin, i.e. whatever it takes to get deep sleep. I >take Temazapam, 15mg. Although it's not recommended >for use over a long period, I've been taking it, with >my doctor's blessings, for years with no disernable >side effects. > >Deep massage therapy is essential for me. . . every >two weeks. . . I don't consider it a luxury, but a >necessity. Initially massage is very painful because >the therapist is stretching that membrane . . . with >regular massage, it's much better. Massage therapists >have told me that a FM client starts out feeling as >though they have very strong muscles, and end up >feeling mushy. > >Supplementing with Magnesium can be very helpful. My >computer, with it's links, is in the shop. I've posted >Dr. Mannesmann's Magnesium Research Lab web address a >number of times but can't find it now. The body stores >20% of it's magnesium in the muscles. Being deficient >can cause added muscle pain. You need a supplement >that has two parts Calcium to one part Magnesium to be >effective. > >Observing a healthy diet is important. > >Exercising - as in keep moving - is important. Too >many people with FM go to bed, or sit around, think >they will get better . . . actually, the more you >rest, the worse you hurt! > >There are books and support groups for FM . . . If you >get into a support group, be sure it's a postive one >that works towards healing, not one that dwells on the >negatives! > >Learning to manage stress and anger is extremely >important as well. > >For my self, I've reached a point where I wouldn't >know that I have FM . . . neither would my massage >therapist. However, if I fail to observe any single >part of my "program", it can come back with a >vengence! > >My analogy for it is walking a balance beam. As long >as I keep everything in balance, I do fine. But if any >single aspect of my life gets off balance, I can fall. >My goal is to get the beam as wide and as close to the >floor as possible. > >There are probably a few things I've missed . . . like >using a far infrared sauna that can help too . . . >Maybe some other ladies would like to add their >observations/suggestions! > >Hugs to all, > >Rogene > > > > >

[Guest guest]

,

That's my understanding too. I've seen some people

(the media, for example) refer to it as an autoimmune

disease, but I don't think they understand what it's

all about. Most people look at FM as a disease. It's

not. Although FM symptoms may accompany a number of

diseases, confusing the issue.

Rogene

--- JOSEPH PALANCA <juliejp61@...> wrote:

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

Rogene, it was to my understanding, that fibro is not

defined as an auto immnue illness. Have that changed

that? Its still considered a syndrome?

>From: Rogene S <saxony01@...> >Reply-To:

>To:

>Subject:

Fibromyalgia >Date: Wed, 13 Apr 2005

22:35:43 -0700 (PDT) > > >Just a bit of info on

Fibromyalgia. > >FM is a syndrome, not a disease. A

syndrome is a >collection of symptoms that have enough

in common to >be given a name. > >A sleep disorder

goes hand and glove with FM. . . In >one study, the

found that they could cause FM in >anyone by depriving

them of sleep. However, after >catching up on their

sleep, some people KEPT the FM >symptoms, where others

became symptom free. > >FM frequently begins after a

major life stressor. . . >An accident, and illness, or

stress like that caused >by a family death. > >IMHO .

.. . what these have in common is that all of >these

can cause one to lose sleep! > >FM is diagnosed by

pain in 11 of 18 pressure points on >the body. These

points are where muscles come together >to connect to

the bone. > >With FM, the membrane that covers the

muscle becomes >very tight. . . This causes the muscle

to pull agains >the joints and feels like joint pain.

> >Treatment needs to be multi-faceted. . Getting

>sufficient deep sleep is essential! . . . There are a

>number of methods to try . . . relaxation techniques,

>hot baths, Sleep Time tea . . . on a temporary basis,

>Melatonin, i.e. whatever it takes to get deep sleep.

I >take Temazapam, 15mg. Although it's not recommended

>for use over a long period, I've been taking it, with

>my doctor's blessings, for years with no disernable

>side effects. > >Deep massage therapy is essential

for me. . . every >two weeks. . . I don't consider it

a luxury, but a >necessity. Initially massage is very

painful because >the therapist is stretching that

membrane . . . with >regular massage, it's much

better. Massage therapists >have told me that a FM

client starts out feeling as >though they have very

strong muscles, and end up >feeling mushy. >

>Supplementing with Magnesium can be very helpful. My

>computer, with it's links, is in the shop. I've

posted >Dr. Mannesmann's Magnesium Research Lab web

address a >number of times but can't find it now. The

body stores >20% of it's magnesium in the muscles.

Being deficient >can cause added muscle pain. You need

a supplement >that has two parts Calcium to one part

Magnesium to be >effective. > >Observing a healthy

diet is important. > >Exercising - as in keep moving -

is important. Too >many people with FM go to bed, or

sit around, think >they will get better . . .

actually, the more you >rest, the worse you hurt! >

>There are books and support groups for FM . . . If

you >get into a support group, be sure it's a postive

one >that works towards healing, not one that dwells

on the >negatives! > >Learning to manage stress and

anger is extremely >important as well. > >For my self,

I've reached a point where I wouldn't >know that I

have FM . . . neither would my massage >therapist.

However, if I fail to observe any single >part of my

" program " , it can come back with a >vengence! > >My

analogy for it is walking a balance beam. As long >as

I keep everything in balance, I do fine. But if any

>single aspect of my life gets off balance, I can

fall. >My goal is to get the beam as wide and as close

to the >floor as possible. > >There are probably a few

things I've missed . . . like >using a far infrared

sauna that can help too . . . >Maybe some other ladies

would like to add their >observations/suggestions! >

>Hugs to all, > >Rogene > > > >

>

[Guest guest]

Hi, Pat. I'm Marina. I, too, am a nurse. Did critical care for a

while and now I work in surgery. If you don't mind, how do you like

being a Legal Nurse Consultant? What kind of education did you have

to go through to do that. I have RA (we think), Sjogren's, and

Fibro. My RA and ANA have always been negative, but my SED rate,

CRP, and a few others are elevated. I don't have the nodules,

either. My rheumy says I am an enigma to him!! Oh well, that's par

for the course. Heck, I can't even get a definate diagnosis as to

why I continue to be a kidney stone factory!! Everything came back

either inconclusive or unknown. Heck, it was recommended that I cut

back on poultry and red meat. That is a funny recommendation

considering I have been a vegetarian for the last 20 years!! So,

it's par for the course for me!! As for the FMS, I work with

doctors who don't think it's a real disorder. Even the guys,

interns and residents, say the same thing. If only they could feel

what we feel!! The fatigue just sucks. I think that is worse than

the pain, though sometimes the pain is a real kick in the butt!!

Well, take care and welcome.

Feel free to email privately anytime!!.........Marina

[Guest guest]

Hi Pat,

I'm Judi, 59 YO and was dx with fibromyalgia a few years ago, but

then found that I have Dercum's Disease, which is quite similar to FM

but add in hundreds of painful lipomas. Believe me, I am very

familiar with the " cement " legs and arms, and I drop things quite

often. Earlier this year I was dx with MS as well, but apparently in

its early stages.

After being insulted and tossed off by a number of doctors, I finally

found a wonderful group at Indiana U. Hospital, and they are working

to try to find something that actually helps. There is currently no

research being done on DD because it is so rare, so we who have it

are doing our own research and acting as our own guinea pigs.

I'm married to Ron who is in his 3rd year of dealing with

Parkinson's, and he is really putting up a good fight. He

understands what it is like to wake in the morning with less energy

than you went to bed with, and we try to support each other.

Unfortunately, once in awhile we both wake up " down " and those are

the hard days. But we do enjoy doing a few things, he plays golf and

we both bowl, and we love playing with our 4 grandkids--a 5-year old

and 2 1/2 year old triplets.

I applaud you for your activity and positive attitude!

Judi

[Guest guest]

Hi Marina,

I don't have your email address, so am just sending you a reply. Being a nurse

with fibromyalgia [and most probably post-polio syndrome, according to my

rheumy], it is difficult not feeling that all my years of nursing took its toll

on my body. My most recent downturn was in 2000 when I contacted mono and

developed a 'post-viral syndrome'. Prior to that I had fibro, but had worked

full time with it for ten years. I have done a LOT of research on all of this,

as that's what nurses do...lol. Numerous times I have asked my rheumy if I have

RA, but he says I don't fit the criteria...however, my joints become

cement-like, and I may just not test positive for it. Who knows...I do know

that stress plays a big role in my flares, too, especially money stress, since I

am single.

Perhaps all muscular/joint autoimmune diseases are connected in some way...there

has to be some faulty wiring someplace. Too many of us have the same symptoms.

I got my disability in 2001 after three tries; finally I put together all my

medical records, a log of what I could and could not do, a pain scale, and the

judge was impressed enough and granted it. It is VERY tough in this part of the

country to get SSDI, it seems, and I can't figure it out. I live in Fargo, ND

where the unemployment rate is about zero and the work ethic is unbelievable.

No one wants to believe someone can't work!

Oh well, I suppose I had better try and ride my bike as I can barely move...at

least it loosens up my knees somewhat. I had a right TKA 18 months ago and need

my left one done, too. It is wonderful to read how supportive this group is.

Oh Marina, you asked about being a Legal Nurse Consultant....I have been an

independent LNC for over ten years. I was asked to review some medical records

on a child back in 1995 and I have done this ever since. BUT with tort reform

and awards being reduced so much with this administration, there is little work

to be had. SO I am going to a rehab counselor next week to try and get

something for 2 days a week....or I will lose my house. I am sure most everyone

here has had these same problems, which just adds to all the stress related to

disability.

Have a great weekend.

Pat Maloney

[ ] Re: Fibromyalgia

Hi, Pat. I'm Marina. I, too, am a nurse. Did critical care for a

while and now I work in surgery. If you don't mind, how do you like

being a Legal Nurse Consultant? What kind of education did you have

to go through to do that. I have RA (we think), Sjogren's, and

Fibro. My RA and ANA have always been negative, but my SED rate,

CRP, and a few others are elevated. I don't have the nodules,

either. My rheumy says I am an enigma to him!! Oh well, that's par

for the course. Heck, I can't even get a definate diagnosis as to

why I continue to be a kidney stone factory!! Everything came back

either inconclusive or unknown. Heck, it was recommended that I cut

back on poultry and red meat. That is a funny recommendation

considering I have been a vegetarian for the last 20 years!! So,

it's par for the course for me!! As for the FMS, I work with

doctors who don't think it's a real disorder. Even the guys,

interns and residents, say the same thing. If only they could feel

what we feel!! The fatigue just sucks. I think that is worse than

the pain, though sometimes the pain is a real kick in the butt!!

Well, take care and welcome.

Feel free to email privately anytime!!.........Marina

[Guest guest]

Hey! That is GREAT@

I have bot hMS AND fibro.I am on that GUAI protocol for the Fibro but am taking LDN for my MS. I am hoping the LDN will help both! Best of luck to you and to me too! hehe

Nola

[low dose naltrexone] Fibromyalgia

Hey all,

My doc. just wrote me a script for LDN!!! I'm really excited, because I've been wanting to try it for a while. I have Fibromyalgia, and this doctor treats a lot of FMS patients. When she gave me the prescription, she said "I'm looking forward to seeing this help you, then I can suggest it to other people."

I'M A PIONEER!!!

This doctor was really great, she read the info I provided (from the website) and also did her own research--but quickly! 2 days after I dropped off the information, I had the prescription in my hand!

Just thought I'd share the happy news!

~

Find Great Deals on Holiday Gifts at

[Guest guest]

Congrats to you on getting your RX! Please keep me posted. I'm on LDN

for MS however sis-in-law has Fibro. I've told her about LDN and she

sounds excited about it but hasn't really been a go-geter (like you)

to get the RX. Perhaps if I had updates from you on your progress

that might inspire her to get going on it. Thank you for sharing! --jc

>

> Hey all,

>

> My doc. just wrote me a script for LDN!!! I'm really excited,

because I've been wanting to try it for a while. I have

Fibromyalgia, and this doctor treats a lot of FMS patients. When she

gave me the prescription, she said " I'm looking forward to seeing

this help you, then I can suggest it to other people. "

>

> I'M A PIONEER!!!

>

> This doctor was really great, she read the info I provided (from

the website) and also did her own research--but quickly! 2 days

after I dropped off the information, I had the prescription in my

hand!

>

> Just thought I'd share the happy news!

>

> ~

>

>

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

>

> Find Great Deals on Holiday Gifts at

>

[Guest guest]

Best of luck I am taking ldn also for Fibro.

I am on day 17 it was hard some days at the start with the side effects. I

started on 1 mg

of the liquid. Then went up to 1.5 after a few days. I am now at 2 mg and doing

good. I

have had a big decrease in pain. Try to maybe start on the smallest dose you

can to adjust

slowly.

All the best

Cathal>

> My doc. just wrote me a script for LDN!!! I'm really excited, because I've

been wanting

to try it for a while. I have Fibromyalgia, and this doctor treats a lot of FMS

patients. When

she gave me the prescription, she said " I'm looking forward to seeing this help

you, then I

can suggest it to other people. "

>

> I'M A PIONEER!!!

>

> This doctor was really great, she read the info I provided (from the

website) and also

did her own research--but quickly! 2 days after I dropped off the information,

I had the

prescription in my hand!

>

> Just thought I'd share the happy news!

>

> ~

>

>

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

>

> Find Great Deals on Holiday Gifts at

>

[Guest guest]

That's great, !

[Guest guest]

I couldn't believe it when the dr. told me there are no tests to run

for this. She told me that if they ran tests for everything and

couldn't come up with what it was, they just gave it a name along

with these symptoms included in the name 'Fibromyalgia'!

What?! They can't figure out whats wrong, so they just combine the

symptoms, and slap a name on it?

That dr. yesterday really was a jerk to me. I was in tears.

sherry

>

> " Surgery for Fibromyalgia at the University of

> Washington "

>

> PLEASE! . . . This is sickening! . . . This article

> sounds like someone is trying to make a living off

> someone's misery - not by helping them, but doing

> further damage!

>

> There are some excellent support groups for

> fibromyalgia. What you want to look for is a group

> that is focused on what it takes to get well, not a

> group that wants to compare symptoms and how bad they

> feel.

>

> Fibromyalgia is not a disease. It's a syndrome. A

> syndrome is a collection of symptoms with enough in

> common to be given a name.

>

> There is one common factor in all those with FM . . .

> a sleep disorder. The body rebuilds itself during deep

> sleep. If one isn't getting deep sleep, their body

> isn't restoring itself nightly. They can induce FM in

> ANYONE by keeping them from sleeping long enough. Once

> they catch up on their sleep, most people are free of

> symptoms. However, those prone to FM, keep them! (I

> bet those were some unhappy study participants!)

>

> There are ways to manage FM to the point that one

> wouldn't know they have it - I've done it myself!

> However, it requires constant vigilence, or a flare

> can occur. I posted a list of things that can be done

> to get better recently . . . Most of those things are

> what I do to keep FM at bay. IMHO, the idea of

> offering to operate on someone, to relieve FM

> symptoms, is outrageous!

>

> Rogene

>

[Guest guest]

Sherry,

There is a test done for FM . . . There are a number

of pressure points that, when pressed are very

painful. . . If you'll look at a book on FM, it will

show you where the points are . . . as well as give

you suggestions on what you can do to relieve it.

It was considered a " garbage can " diagnosis - given

when the doctor couldn't find anything else. . .

You really don't want this diagnosis though because it

will make getting private insurance virtually

impossible.

After you get explanted and detox, most, if not all

the symptoms will improve.

Hugs

Rogene

[Guest guest]

Angel Eyes,

I haven’t been on this list for a

long time, but I feel compelled to share with you my best friend’s

experience. She and I lived in South

Carolina for 30 years. She got diagnosed with fibro

and started on all the fibro meds. I got diagnosed with chronic fatigue

syndrome, then a mycoplasma infection and finally with Lyme disease. Because I

got diagnosed with an infection early on I was given minocycline and then

Zithromax. I gradually recovered to about 80% of normal health. She went

continually downhill.

She didn’t want to listen to me

because what I was saying was not what her favorite rheumatologist was saying.

I talked with her on the phone last night.

She said he finally put her on minocycline for arthritis and all her pain and

swelling in her hands and knees has gone away. Mind you, she has yet to even

consider getting tested for Lyme disease. I would bet the South Carolina peach orchard that she has

Lyme just as 3 of us in my immediate family do. She is still very sick, but at

least she is seeing some improvement and is very excited about that.

Minocycline is cheap. Is there some doctor

around who would even consider treating you with this? It is a treatment for

RA, if not for fibro. Also, if you email me off list I MAY be able to find you

a doctor nearby who would get you accurately tested for Lyme or at least try

using antibiotics on your case. My email is pj7@....

Let me know if I can help.

a

Carnes

Las Vegas, NV (no

ticks in the desert)

I'm having another " flareup " and even sicker, after ruling

everything

else out, my symptoms are perfect match for fibromyalgia, which

obvious to me I've had since 2000-2001, but rheumatologsit I saw then

just blew me off. Because of him I now have more life threatening

secondary conditions.

'Research shows that people with fibromyalgia typically see many

doctors before receiving the diagnosis. One reason for this may be

that pain and fatigue, the main symptoms of fibromyalgia, overlap with

many other conditions. Therefore, doctors often have to rule out other

potential causes of these symptoms before making a diagnosis of

fibromyalgia. Another reason is that there are currently no diagnostic

laboratory tests for fibromyalgia; standard laboratory tests fail to

reveal a physiologic reason for pain. Because there is no generally

accepted, objective test for fibromyalgia, some doctors unfortunately

may conclude a patient's pain is not real, or they may tell the

patient there is little they can do.'

I am not employed right now, the only insurance I have is a county

health plan, I have to use doctors in my county on an approved list.

The ONLY rhematologist in the county is the one who basically imlpied

i was a hypochodriac and sent me away in 2001. I hope he learned

something in last 5 years but if not, How do i convince him my pain,

fatigue, weakness and all is REAL and to diagnose me so I can receive

proper treament and care!?!

I'm so frustrated, last time it took me 3 yrs, herbs, supplements &

vitamins and water aerobics to get myself into remission. I can't go

through that again, plus now ITP blood disorder could kill me without

iv treatments, that my insurance wont cover($3000+ each). Hard not to

ask myself why am I even trying, they obviously don't care if i live.

Why should I keep fighting.

[Guest guest]

Hi Angel Eyes,

Have a look here:

http://www.bodyzone.com/articles/article.html?id=20

My husband has Fibromyalgia too and was diagnosed with Chlamydia Pneumoniae and 2 years of antibiotics didn't help.

He followed detox because of heavy metals in blood - no improvement.

What did help was going gluten/soya/dairy free.

He started to feel better after only 3 or 4 days and slowly-slowly-slowly he continues to get better. It is 21 months now that we are on this diet.

If you are interested don't hesitate and I'll send you more links.

The idea of this diet might not be tempting but it isn't expensive and there are no side effects or risks involved. If it doesn't work for you that will be it.

Many people are gluten sensitive without any of the classic abdominal symptoms.

Every blessing,

Yannic

fa034262@...

On 5/27/06, angel_eyes_112876 <angel_eyes_112876@...> wrote:

I'm having another " flareup " and even sicker, after ruling everythingelse out, my symptoms are perfect match for fibromyalgia, which

obvious to me I've had since 2000-2001, but rheumatologsit I saw thenjust blew me off. Because of him I now have more life threateningsecondary conditions.'Research shows that people with fibromyalgia typically see many

doctors before receiving the diagnosis. One reason for this may bethat pain and fatigue, the main symptoms of fibromyalgia, overlap withmany other conditions. Therefore, doctors often have to rule out other

potential causes of these symptoms before making a diagnosis offibromyalgia. Another reason is that there are currently no diagnosticlaboratory tests for fibromyalgia; standard laboratory tests fail toreveal a physiologic reason for pain. Because there is no generally

accepted, objective test for fibromyalgia, some doctors unfortunatelymay conclude a patient's pain is not real, or they may tell thepatient there is little they can do.'I am not employed right now, the only insurance I have is a county

health plan, I have to use doctors in my county on an approved list.The ONLY rhematologist in the county is the one who basically imlpiedi was a hypochodriac and sent me away in 2001. I hope he learnedsomething in last 5 years but if not, How do i convince him my pain,

fatigue, weakness and all is REAL and to diagnose me so I can receiveproper treament and care!?!I'm so frustrated, last time it took me 3 yrs, herbs, supplements & vitamins and water aerobics to get myself into remission. I can't go

through that again, plus now ITP blood disorder could kill me withoutiv treatments, that my insurance wont cover($3000+ each). Hard not toask myself why am I even trying, they obviously don't care if i live.

Why should I keep fighting.

[Guest guest]

<fa034262@...> wrote:

>

> Hi Angel Eyes,

>

> Have a look here:

> http://www.bodyzone.com/articles/article.html?id=20

> My husband has Fibromyalgia too and was diagnosed with Chlamydia

Pneumoniae

> and 2 years of antibiotics didn't help.

> He followed detox because of heavy metals in blood - no improvement.

> What did help was going gluten/soya/dairy free.

May I ask what the antibiotics regime(s) consisted of? I like to know

about peoples outcomes with particular regimes.

[Guest guest]

I'm curious too. Did he eventually test negative for c. pneumonia after treatment but symptoms remained, or was he unable to kill the c.pneumonia? And was he ever tested for any other bugs? I'm very happy he's feeling better, whatever the reason. Glad you found something that worked, again whatever the reason. penny <usenethod@...> wrote: <fa034262@...> wrote:>> Hi Angel Eyes,> > Have a look here:> http://www.bodyzone.com/articles/article.html?id=20> My husband has Fibromyalgia too and was diagnosed with Chlamydia Pneumoniae> and 2 years of antibiotics didn't help.> He followed detox because of

heavy metals in blood - no improvement.> What did help was going gluten/soya/dairy free.May I ask what the antibiotics regime(s) consisted of? I like to know about peoples outcomes with particular regimes.

[Guest guest]

He took different kinds of antibiotics - up to 4 different kinds daily.

As it is several years ago I don't remember the names.

After 2 years he finally started to feel better and he tested negative.

So all MDs involved said that he could stop with the antibiotics.

He did but only 3 weeks later he started to feel worse again.

He was again tested and the result was positive.

Nobody had an explanation but they advised to take antibiotics again.

He refused because of the side effects and the fact that there weren't any guarantees.

He then remained very tired until we went gluten/soya/dairy free in August 2004.

After 3 or 4 days only he started to feel much better.

He is now again 90-95% of his former self which is not bad as he was 48 when he fell ill and will be 59 later this year.

This diet even helped for the Neuropathy he had developed during the time he was sick.

MDs told us that they couldn't do anything against it and that it would get worse and worse.

Well, the pains have disappeared and he can again walk normal distances.

Gluten sensitivity is linked to numerous illnesses and symptoms.

If anyone is interested let me know and I'll send the long list.

Blessings,

Yannic

On 5/27/06, Penny Houle <pennyhoule@...> wrote:

I'm curious too. Did he eventually test negative for c. pneumonia after treatment but symptoms remained, or was he unable to kill the c.pneumonia? And was he ever tested for any other bugs?

I'm very happy he's feeling better, whatever the reason. Glad you found something that worked, again whatever the reason.

penny

<usenethod@...> wrote:

<fa034262@...> wrote:>> Hi Angel Eyes,> > Have a look here:>

http://www.bodyzone.com/articles/article.html?id=20> My husband has Fibromyalgia too and was diagnosed with Chlamydia Pneumoniae> and 2 years of antibiotics didn't help.> He followed detox because of heavy metals in blood - no improvement.

> What did help was going gluten/soya/dairy free.May I ask what the antibiotics regime(s) consisted of? I like to know about peoples outcomes with particular regimes.

[Guest guest]

Thats great. I know a few others who have had dramatic and lasting

success pursuing food intolerances. Tho I've also seen a number of

reports of no benefit. I've never pursued this myself.

>

> He took different kinds of antibiotics - up to 4 different kinds

daily.

> As it is several years ago I don't remember the names.

>

> After 2 years he finally started to feel better and he tested

negative.

> So all MDs involved said that he could stop with the antibiotics.

> He did but only 3 weeks later he started to feel worse again.

> He was again tested and the result was positive.

>

> Nobody had an explanation but they advised to take antibiotics

again.

> He refused because of the side effects and the fact that there

weren't any

> guarantees.

>

> He then remained very tired until we went gluten/soya/dairy free in

August

> 2004.

> After 3 or 4 days only he started to feel much better.

> He is now again 90-95% of his former self which is not bad as he

was 48 when

> he fell ill and will be 59 later this year.

> This diet even helped for the Neuropathy he had developed during

the time he

> was sick.

> MDs told us that they couldn't do anything against it and that it

would get

> worse and worse.

> Well, the pains have disappeared and he can again walk normal

distances.

>

> Gluten sensitivity is linked to numerous illnesses and symptoms.

> If anyone is interested let me know and I'll send the long list.

>

> Blessings,

> Yannic

>

>

[Guest guest]

The strangest thing is that neither he nor I had any of the classic symptoms of Gluten Sensitivity but then it is a very underdiagnosed condition because MDs don't seem to think of it.

We started because of information I had found on the Internet.

I would advice anyone with several seemingly unrelated health problems to do some googling with each of these problems and gluten to see if there are links.

Gluten can also cause a lot of neurological problems.

Some people with a gluten problem don't get better when going gluten free and can only avoid further deterioration. It all depends on the kind of damage that has done to the intestins.

All the best,

Yannic

On 5/28/06, <usenethod@...> wrote:

Thats great. I know a few others who have had dramatic and lastingsuccess pursuing food intolerances. Tho I've also seen a number of

reports of no benefit. I've never pursued this myself.

>> He took different kinds of antibiotics - up to 4 different kindsdaily.> As it is several years ago I don't remember the names.>> After 2 years he finally started to feel better and he tested

negative.> So all MDs involved said that he could stop with the antibiotics.> He did but only 3 weeks later he started to feel worse again.> He was again tested and the result was positive.>

> Nobody had an explanation but they advised to take antibioticsagain.> He refused because of the side effects and the fact that thereweren't any> guarantees.>> He then remained very tired until we went gluten/soya/dairy free in

August> 2004.> After 3 or 4 days only he started to feel much better.> He is now again 90-95% of his former self which is not bad as hewas 48 when> he fell ill and will be 59 later this year.

> This diet even helped for the Neuropathy he had developed duringthe time he> was sick.> MDs told us that they couldn't do anything against it and that itwould get> worse and worse.

> Well, the pains have disappeared and he can again walk normaldistances.>> Gluten sensitivity is linked to numerous illnesses and symptoms.> If anyone is interested let me know and I'll send the long list.

>> Blessings,> Yannic>>

[Guest guest]

LCL, You can buy an Ionic Oasis foot bath for less than $250 through ebay . . . then do then at your convenience. . . A number of the women in the group are using them. Did you see the foot bath photos in the archives? Nasty stuff! Rogene

[Guest guest]

My 27yo son thinks he has this also. We’ve

thought for years that his problems were due to an Army injury, but he had the

anxiety and depression before the injury…so now he’s thinking that

the injury exacerbated the fibro. I too would like to know how people are

treating this. And I’d like to forward posts on to him if that’s

okay.

I have many female friends (mostly

writers) who have this, but had never heard of a male with fibromyalgia.

Sharyn

From: health [mailto:health ] On Behalf Of Suzanne

one of the guys in the group said he thought he has fibromyalgia... at

least all the symtoms fit.. of course he does have stress in his life

also. So I told him I would check my group to see who has this and how

they are treating it. I gave him some suggestions meantime but thought it

would be good to hear from those who are actually dealing with it.

[Guest guest]

I have read and talked with women who have virtually eliminated all symptoms by ridding their diets of all processed foods and all animal products. That means no milk, cheese, yogurt, fish, chicken, etc.... AND they stopped cooking their food.

YIKES! That means they are eating the dreaded raw food diet! And they are feeling great and functioning very well.

Shari