fibromyalgia

[Guest guest]

One more thing....if your doctor won't prescribe the Minocin because

he/she says that it will agravate your 'might be Lupus'....you can

use Doxycycline instead of the Minocin (minocycline). The doxy gives

lots of people an upset stomach, but not if they take it with a meal.

Hope this helps,

Connie H.

> > A Mental Health Issue???? Does fibro make you nuts??? My regular

doctor said

> > yesterday he thinks its lupus, have a dermy appointment next

wednesday. Last

[Guest guest]

In a message dated 4/11/01 6:24:19 AM Pacific Daylight Time, grandm4@...

writes:

<< A Mental Health Issue???? Does fibro make you nuts??? >>

Sue, not you are not nuts. Fibro is a REAL disease. Believe me. Don't let

a dr or anyone else tell you different. I have alot of papers to back this

up and if you would like a copy just let me know. I was a support group

leader for 5 years.

Of course I was probably already nuts before fibro. LOL

hugs

[Guest guest]

Hi ,

I would like the papers on fibro when ever you have the time to send them. Thanks a bunch!

Love Lu

Fibro is a REAL disease. Believe me. Don't let a dr or anyone else tell you different. I have alot of papers to back this up and if you would like a copy just let me know. I was a support group leader for 5 years.

[Guest guest]

Lu, will send them just as soon as I find them. LOL

hugss

[Guest guest]

, if its not too much trouble could you email me the info on fibro as

that's what my doctor said I had on Wednesday...thanks so much....Sue

[Guest guest]

In a message dated 4/13/01 1:50:08 PM Pacific Daylight Time, grandm4@...

writes:

<< , if its not too much trouble could you email me the info on fibro

as

that's what my doctor said I had on Wednesday...thanks so much....Sue

>>

Sue, I'd be glad to send you all the information I have. I can't promise it

will be today, but I will get you what I have ASAP.

Hope you have a Happy Easter.

hugs

[Guest guest]

Thanks ....Sue

[Guest guest]

Thanks ....Sue

[Guest guest]

Thanks ....Sue

[Guest guest]

i've lost the post now on fibromyalgia (sp?). was diagnosed with

this a long time ago - although i admit, with all my little quirks,

i don't know how accurate that was.

in any case, i went to see an orthomolecular doctor and did IV

treatments of vitamin C. it was here in the U.S., but he was

european and saw things a little differently (i think it can make a

difference sometimes). well, the vit C really really helped. sort of

got my system over a hump. just thought i'd mention it...

rach

[Guest guest]

BJActually while it has traditionally been treated by rheumatologists much as an autoimmune disease is, the current thinking does not consider it to be one. This shows how difficult the diagnosis and treatment is when its definition is so elusive.Per the National Fibromyalgia Association it is considered a syndrome rather than a disease because rather than being a condition with identifiable cause or even recognizable symptoms it tends to be a collection of signs, symptoms and medical problems that often occur together. So, you can't diagnose it directly, but based on a complex group of factors determined by the American College of Rheumatology. It is believed that the average patient takes 5 years before an accurate diagnosis. To receive a diagnosis of FM, the patient must meet the following diagnostic criteria: Widespread pain in all four quadrants of the body for a minimum duration of three monthsTenderness or pain in at least 11 of the 18 specified tender points when pressure is appliedOften the medical profession has been very dismissive of the condition and some even denying the existence. Often it was considered a psychological problem given that attitude. Also there are often many other conditions which accompany it including several autoimmune diseases. However, there have been some breakthroughs that may help significantly in understanding the syndrome. The latest thinking is that it is a central sensitization in which the brain is more sensitive to pain signals than in persons without the condition. Essentially pain travels to the brain and because of chemical differences the neurotransmitters and the pain receptors react differently. Now, this means that instead of treating it as a muscle or tissue disease it can now be treated as a neurological condition. That also means that anti-seizure medications such as Neurontin or Lyrica or medications impacting serotonin and brain chemicals such as Cymbalta may be effective or a newly approved medication for fibromyalgia, Savella. Additionally, physical therapy, accupuncture, electromyogram biofeedback, hypnotherapy, and other treatments sometimes help. Sleep management is a major issue due to the pain and also the fact it is often accompanied by restless limb or periodic limb movement, other neurological signs. This increased understanding explains why those with it find pain in so many areas of their body and why it is so dehabilitating physically and psychologically. Who isn't going to be depressed when they are feeling pain from nearly every part of their body? Hopefully the science related to the disease has advanced enough that it's seriousness is more recognized and diagnosis made earlier.>> Basically it is an auto immune disease with no known cause that causes a lot of pain. I have had it for over 20 years. They called it fibrositis then. Beverley Joy-NOT Beverley Kay> > fibromyalgia> > > what is fibromyalgia (spelling???)> > i keep forgetting to look it up> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life Listed 1/09> www.transplantfund.org>

[Guest guest]

BJ ... I remember when FM was called Fibrositis too. It was at first an arthritic problem then something else and then something else. Funny, I was even told it is not an AID..

Around my area it's hard now to find a dr who will take an FM patient... too complicated. My Rheumy does take FM that's how I found him. But he Rx no pain meds.... many drs are opting to Rx no pain meds. I've been with a pain clinic for over two years.

I so dislike it that we go to so many different drs! The right hand doesn't know what the left hand is doing without our exceptional 'chart notes' and test results.

Have a good day today!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia

what is fibromyalgia (spelling???)

i keep forgetting to look it up

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org

[Guest guest]

BJ ... I remember when FM was called Fibrositis too. It was at first an arthritic problem then something else and then something else. Funny, I was even told it is not an AID..

Around my area it's hard now to find a dr who will take an FM patient... too complicated. My Rheumy does take FM that's how I found him. But he Rx no pain meds.... many drs are opting to Rx no pain meds. I've been with a pain clinic for over two years.

I so dislike it that we go to so many different drs! The right hand doesn't know what the left hand is doing without our exceptional 'chart notes' and test results.

Have a good day today!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia

what is fibromyalgia (spelling???)

i keep forgetting to look it up

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org

[Guest guest]

BJ ... I remember when FM was called Fibrositis too. It was at first an arthritic problem then something else and then something else. Funny, I was even told it is not an AID..

Around my area it's hard now to find a dr who will take an FM patient... too complicated. My Rheumy does take FM that's how I found him. But he Rx no pain meds.... many drs are opting to Rx no pain meds. I've been with a pain clinic for over two years.

I so dislike it that we go to so many different drs! The right hand doesn't know what the left hand is doing without our exceptional 'chart notes' and test results.

Have a good day today!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia

what is fibromyalgia (spelling???)

i keep forgetting to look it up

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org

[Guest guest]

Bruce... your explanation here explains why some drs don't treat FM anymore.

The Cymbalta did help the pain (from whatever) but as you know I stopped taking it because it is so expensive and this girl AIN'T falling through the donut hole again.

Dr had me start taking Celexa at night instead of morning. Don't see a lot of difference yet. But it's only been 10 days.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia> > > what is fibromyalgia (spelling???)> > i keep forgetting to look it up> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life Listed 1/09> www.transplantfund.org>

[Guest guest]

Bruce... your explanation here explains why some drs don't treat FM anymore.

The Cymbalta did help the pain (from whatever) but as you know I stopped taking it because it is so expensive and this girl AIN'T falling through the donut hole again.

Dr had me start taking Celexa at night instead of morning. Don't see a lot of difference yet. But it's only been 10 days.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia> > > what is fibromyalgia (spelling???)> > i keep forgetting to look it up> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life Listed 1/09> www.transplantfund.org>

[Guest guest]

Bruce... your explanation here explains why some drs don't treat FM anymore.

The Cymbalta did help the pain (from whatever) but as you know I stopped taking it because it is so expensive and this girl AIN'T falling through the donut hole again.

Dr had me start taking Celexa at night instead of morning. Don't see a lot of difference yet. But it's only been 10 days.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia> > > what is fibromyalgia (spelling???)> > i keep forgetting to look it up> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life Listed 1/09> www.transplantfund.org>

[Guest guest]

Sher

The meds I mentioned are not among those called pain meds normally but

have been found to help with FM. Of those, neurontin (gabapentin) is a

generic, has been around a long time, and has very few side effects.

Mine is prescribed by my neurologist for my limbs. If your FM increases

you might suggest an approach with one of the medications now being used

and recommended more such as neurontin. They may just impact the brain

appropriately to reduce the pain.

>

> BJ ... I remember when FM was called Fibrositis too. It was at first

an arthritic problem then something else and then something else. Funny,

I was even told it is not an AID..

> Around my area it's hard now to find a dr who will take an FM

patient... too complicated. My Rheumy does take FM that's how I found

him. But he Rx no pain meds.... many drs are opting to Rx no pain meds.

I've been with a pain clinic for over two years.

> I so dislike it that we go to so many different drs! The right hand

doesn't know what the left hand is doing without our exceptional 'chart

notes' and test results.

> Have a good day today!

> MamaSher; 70, IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> fibromyalgia

>

>

> what is fibromyalgia (spelling???)

>

> i keep forgetting to look it up

>

>

> Pink Joyce IPF 3/06 Pennsylvania

> Donate Life Listed 1/09

> www.transplantfund.org

>

[Guest guest]

Sher

Neurontin (Generic Gabapentin) is available generic and is moderately

priced although not cheap. Also, a doctor will often prescribe a range

of amount per day, like 1-3, or prescribe the upper amount he might want

you to take, like 3 when he wants you to start with 1 or 2. This allows

you to stretch them further. If the Cymbalta helped, the neurontin very

well might. These are going after the pain receptors and processing in

the brain.

> >

> > Basically it is an auto immune disease with no known cause that

causes a lot of pain. I have had it for over 20 years. They called it

fibrositis then. Beverley Joy-NOT Beverley Kay

> >

> > fibromyalgia

> >

> >

> > what is fibromyalgia (spelling???)

> >

> > i keep forgetting to look it up

> >

> >

> > Pink Joyce IPF 3/06 Pennsylvania

> > Donate Life Listed 1/09

> > www.transplantfund.org

> >

>

[Guest guest]

I've seen FM meds advertised on TV and I will inquire about neurontin.

Thanks Bruce.

Thank goodness there is only one of me. lol

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia>>> what is fibromyalgia (spelling???)>> i keep forgetting to look it up>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund.org>

[Guest guest]

I've seen FM meds advertised on TV and I will inquire about neurontin.

Thanks Bruce.

Thank goodness there is only one of me. lol

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia>>> what is fibromyalgia (spelling???)>> i keep forgetting to look it up>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund.org>

[Guest guest]

Sher

Lyrica is the one you see advertised most, but it is not available

generic and is expensive. Lyrica was the first drug approved for the

treatment of fibromyalgia. Were it not for the doughnut hole it would be

the one I might suggest, but if it weren't for the hole you'd still be

on Cymbalta for it.

> > >

> > > Basically it is an auto immune disease with no known cause that

> causes a lot of pain. I have had it for over 20 years. They called it

> fibrositis then. Beverley Joy-NOT Beverley Kay

> > >

> > > fibromyalgia

> > >

> > >

> > > what is fibromyalgia (spelling???)

> > >

> > > i keep forgetting to look it up

> > >

> > >

> > > Pink Joyce IPF 3/06 Pennsylvania

> > > Donate Life Listed 1/09

> > > www.transplantfund.org

> > >

> >

>

[Guest guest]

Sher

Lyrica is the one you see advertised most, but it is not available

generic and is expensive. Lyrica was the first drug approved for the

treatment of fibromyalgia. Were it not for the doughnut hole it would be

the one I might suggest, but if it weren't for the hole you'd still be

on Cymbalta for it.

> > >

> > > Basically it is an auto immune disease with no known cause that

> causes a lot of pain. I have had it for over 20 years. They called it

> fibrositis then. Beverley Joy-NOT Beverley Kay

> > >

> > > fibromyalgia

> > >

> > >

> > > what is fibromyalgia (spelling???)

> > >

> > > i keep forgetting to look it up

> > >

> > >

> > > Pink Joyce IPF 3/06 Pennsylvania

> > > Donate Life Listed 1/09

> > > www.transplantfund.org

> > >

> >

>

[Guest guest]

Bruce... I'm considering going back on Cymbalta anyway.... I called my ins and Cym would take up at least 1/2 of my available money for Rx through the year. Perhaps I can pay a cash price for lesser Rx amounts or even the $4 generics and let my Cym amt always be available.

Cymbalta is the very best antidepressant I've ever been on and it helps w/pain as well.

DAMNIT! I want to get mad at somebody for the run around we go through for meds and/or other medical tests/treatments.

I swear I have a part time job following my health care! Trouble shooting, verifying, confirming, problem solving, phone calls phone calls and more phone calls and then calling back when 'they' don't call back. Comparing EOB with bills and more problem solving. I mean on and on.

I don't think I'm much different than most of us.

There. Got that out! lol. Thanks for letting me vent.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

fibromyalgia> > >> > >> > > what is fibromyalgia (spelling???)> > >> > > i keep forgetting to look it up> > >> > >> > > Pink Joyce IPF 3/06 Pennsylvania> > > Donate Life Listed 1/09> > > www.transplantfund.org> > >> >>

[Guest guest]

Bruce, Thank you for the info. After all these years I know all of that but it is good for us fibro patients to have other people know about it. I didn't know that they are now thinking that it is not an auto-immune disease. I was told that one auto-immune disease seems to lead to another and that I probably had Sjogren's. I was tested and I do have it. Now the IPF. I am having a lot of fatigue lately so I am behind on answering my mail. BJ

fibromyalgia> > > what is fibromyalgia (spelling???)> > i keep forgetting to look it up> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life Listed 1/09> www.transplantfund.org>