Re: HELP!! PELVIC FL DYSFUNCTION : :CAN MUSCLE SPASMS SPREAD CLEAR UP THE BODY?

[Guest guest]

I would recommend that you get to a rheumatologist to be

evaluated for fibromyalgia. Vulvodynia can be a symptom of it.

And the pelvic floor spasms can also be a symptom.

Pls get in to a rheumatologist.

Kristy

__________________________________________________

[Guest guest]

I would recommend that you get to a rheumatologist to be

evaluated for fibromyalgia. Vulvodynia can be a symptom of it.

And the pelvic floor spasms can also be a symptom.

Pls get in to a rheumatologist.

Kristy

__________________________________________________

[Guest guest]

I would recommend that you get to a rheumatologist to be

evaluated for fibromyalgia. Vulvodynia can be a symptom of it.

And the pelvic floor spasms can also be a symptom.

Pls get in to a rheumatologist.

Kristy

__________________________________________________

[Guest guest]

Hi,

For many years I had muscle spasms all over my body.

The ones in my back caused me the most problem.

I think you should be looking for a condition that

causes it and not just take medicine to control the

symptoms although if you are in pain, and you are,

take what you need. Your idea is right about needing

some ideas and help and not to just be pummeled by

doctor after doctor.

Usually a lot of muscle spasms I think indicate that

you may have some serious malabsorption going on--like

potassium, calcium, magnesium. If there is a reason

for the malabsorption, a problem in your small

intestine where enzymes are produced for example that

help to absorb and digest nutrients, you will not be

able to just take vitamins and minerals and fix it as

your body is not functioning correctly. All over

muscle spasms also indicates nerve involvement.

My spasms all went away when I found that I was gluten

sensitive, and when I stopped eating gluten (and

dairy) they went away almost immediately.

" Can Pelvic floor dysfunction get this bad? "

No!!!!! I would say you don't have " pelvic floor

dysfunction " . Certainly your pelvic floor may not be

functioning if it is spasming but to call a symptom a

name is to mislead, misrepresent, and prevent healing.

Do they call spasms in your back and neck and

shoulders and lower face, " Back, Neck, Shoulder, and

Lower Face Dysfunction " . No! Actually they may call

the Lower Face spasms TMJ. You definitely have a

problem.

I seriously suggest that you spend $118.00 dollars and

order a Gluten Sensitivity test from

http:/www.enterolab.com. This lab is the only one

where you can get a thoroughly accurate test and the

reasons for this are varied and somewhat complex. If

you wish to know the reason read the essay entitled

" Before the Villi Are Gone " by the doctor who owns the

lab that is on the website. If this test is positive

you will likely know most of what is wrong with you.

It will be the best investment that you ever made I

suspect. The blood tests the doctor will give you are

not accurate and are a waste of time. You need to

explore this on your own. If they knew what was

happening to you and could fix it, they would. They

don't know and can't. My husband calls this passing

the buck a not very polite name--circle jerk.

Stay well.

Arline

--- snofyre00 wrote:

> My pelvic muscles spasm so badly, that they spread

> clear up my back, to

> my neck, shoulders and lower face.

>

> Can Pelvic floor dysfunction get this bad?

__________________________________________________

[Guest guest]

Hi I need to add something to my response and that is that valium is a crutch to try to help you get through until you have benefitted from physical therapy. I did take it on a regular basis but only take it now when I fly (fear) or when I hurt (rarely every six weeks or so). I agree with Arline about the calcium/ magnesium deficiency and hope that you are on that supplement. As for the term pelvic floor dysfunction, it is a very broad diagnosis as it also covers incontinance. It just means that your pelvic floor isn't working right. Many of us also have TMJ because our bodies respond to stress and pain by contracting. This makes the nerves angry which causes more pain which starts a very vicious circle called chronic pain. When I finally found Dr. Weiss and his PT Prendergast, my diagnosis went from Interstitial Cystitis and

Vulvodynia (other docs, many other docs) to pelvic floor contracture, diastasis recti, connective tissue disorder, and pudendal neuralgia. The doctors can't help you if they are uneducated, the problem is they don't know that they can help you. There are so few doctors who know anything about this problem. In my opinion, about the gluten sensitivity, sure, do it. Rule it in or out, but don't not do PT because of the results. How long have you been hurting and do you know what started it? love, Molly A physical therapy success, living a happy, healthy life!! BABB wrote: Hi,For many years I had muscle spasms all over my body.The ones in my back caused me the most problem.I think you should be looking for a condition thatcauses it and not just take medicine to control thesymptoms although if you are in pain, and you are,take what you need. Your idea is right about needingsome ideas and help and not to just be pummeled bydoctor after doctor.Usually a lot of muscle spasms I think indicate thatyou may have some serious malabsorption going on--likepotassium, calcium, magnesium. If there is a reasonfor the malabsorption, a problem in your smallintestine where enzymes are produced for example thathelp to absorb and digest nutrients, you

will not beable to just take vitamins and minerals and fix it asyour body is not functioning correctly. All overmuscle spasms also indicates nerve involvement.My spasms all went away when I found that I was glutensensitive, and when I stopped eating gluten (anddairy) they went away almost immediately."Can Pelvic floor dysfunction get this bad?"No!!!!! I would say you don't have "pelvic floordysfunction". Certainly your pelvic floor may not befunctioning if it is spasming but to call a symptom aname is to mislead, misrepresent, and prevent healing.Do they call spasms in your back and neck andshoulders and lower face, "Back, Neck, Shoulder, andLower Face Dysfunction". No! Actually they may callthe Lower Face spasms TMJ. You definitely have aproblem.I seriously suggest that you spend $118.00 dollars andorder a Gluten Sensitivity test fromhttp:/www.enterolab.com. This lab

is the only onewhere you can get a thoroughly accurate test and thereasons for this are varied and somewhat complex. Ifyou wish to know the reason read the essay entitled"Before the Villi Are Gone" by the doctor who owns thelab that is on the website. If this test is positiveyou will likely know most of what is wrong with you.It will be the best investment that you ever made Isuspect. The blood tests the doctor will give you arenot accurate and are a waste of time. You need toexplore this on your own. If they knew what washappening to you and could fix it, they would. Theydon't know and can't. My husband calls this passingthe buck a not very polite name--circle jerk.Stay well.Arline--- snofyre00 <snofyre00> wrote:> My pelvic muscles spasm so badly, that they spread> clear up my back, to > my neck, shoulders and

lower face.> > Can Pelvic floor dysfunction get this bad?__________________________________________________

[Guest guest]

Hi I need to add something to my response and that is that valium is a crutch to try to help you get through until you have benefitted from physical therapy. I did take it on a regular basis but only take it now when I fly (fear) or when I hurt (rarely every six weeks or so). I agree with Arline about the calcium/ magnesium deficiency and hope that you are on that supplement. As for the term pelvic floor dysfunction, it is a very broad diagnosis as it also covers incontinance. It just means that your pelvic floor isn't working right. Many of us also have TMJ because our bodies respond to stress and pain by contracting. This makes the nerves angry which causes more pain which starts a very vicious circle called chronic pain. When I finally found Dr. Weiss and his PT Prendergast, my diagnosis went from Interstitial Cystitis and

Vulvodynia (other docs, many other docs) to pelvic floor contracture, diastasis recti, connective tissue disorder, and pudendal neuralgia. The doctors can't help you if they are uneducated, the problem is they don't know that they can help you. There are so few doctors who know anything about this problem. In my opinion, about the gluten sensitivity, sure, do it. Rule it in or out, but don't not do PT because of the results. How long have you been hurting and do you know what started it? love, Molly A physical therapy success, living a happy, healthy life!! BABB wrote: Hi,For many years I had muscle spasms all over my body.The ones in my back caused me the most problem.I think you should be looking for a condition thatcauses it and not just take medicine to control thesymptoms although if you are in pain, and you are,take what you need. Your idea is right about needingsome ideas and help and not to just be pummeled bydoctor after doctor.Usually a lot of muscle spasms I think indicate thatyou may have some serious malabsorption going on--likepotassium, calcium, magnesium. If there is a reasonfor the malabsorption, a problem in your smallintestine where enzymes are produced for example thathelp to absorb and digest nutrients, you

will not beable to just take vitamins and minerals and fix it asyour body is not functioning correctly. All overmuscle spasms also indicates nerve involvement.My spasms all went away when I found that I was glutensensitive, and when I stopped eating gluten (anddairy) they went away almost immediately."Can Pelvic floor dysfunction get this bad?"No!!!!! I would say you don't have "pelvic floordysfunction". Certainly your pelvic floor may not befunctioning if it is spasming but to call a symptom aname is to mislead, misrepresent, and prevent healing.Do they call spasms in your back and neck andshoulders and lower face, "Back, Neck, Shoulder, andLower Face Dysfunction". No! Actually they may callthe Lower Face spasms TMJ. You definitely have aproblem.I seriously suggest that you spend $118.00 dollars andorder a Gluten Sensitivity test fromhttp:/www.enterolab.com. This lab

is the only onewhere you can get a thoroughly accurate test and thereasons for this are varied and somewhat complex. Ifyou wish to know the reason read the essay entitled"Before the Villi Are Gone" by the doctor who owns thelab that is on the website. If this test is positiveyou will likely know most of what is wrong with you.It will be the best investment that you ever made Isuspect. The blood tests the doctor will give you arenot accurate and are a waste of time. You need toexplore this on your own. If they knew what washappening to you and could fix it, they would. Theydon't know and can't. My husband calls this passingthe buck a not very polite name--circle jerk.Stay well.Arline--- snofyre00 <snofyre00> wrote:> My pelvic muscles spasm so badly, that they spread> clear up my back, to > my neck, shoulders and

lower face.> > Can Pelvic floor dysfunction get this bad?__________________________________________________

[Guest guest]

Hi I need to add something to my response and that is that valium is a crutch to try to help you get through until you have benefitted from physical therapy. I did take it on a regular basis but only take it now when I fly (fear) or when I hurt (rarely every six weeks or so). I agree with Arline about the calcium/ magnesium deficiency and hope that you are on that supplement. As for the term pelvic floor dysfunction, it is a very broad diagnosis as it also covers incontinance. It just means that your pelvic floor isn't working right. Many of us also have TMJ because our bodies respond to stress and pain by contracting. This makes the nerves angry which causes more pain which starts a very vicious circle called chronic pain. When I finally found Dr. Weiss and his PT Prendergast, my diagnosis went from Interstitial Cystitis and

Vulvodynia (other docs, many other docs) to pelvic floor contracture, diastasis recti, connective tissue disorder, and pudendal neuralgia. The doctors can't help you if they are uneducated, the problem is they don't know that they can help you. There are so few doctors who know anything about this problem. In my opinion, about the gluten sensitivity, sure, do it. Rule it in or out, but don't not do PT because of the results. How long have you been hurting and do you know what started it? love, Molly A physical therapy success, living a happy, healthy life!! BABB wrote: Hi,For many years I had muscle spasms all over my body.The ones in my back caused me the most problem.I think you should be looking for a condition thatcauses it and not just take medicine to control thesymptoms although if you are in pain, and you are,take what you need. Your idea is right about needingsome ideas and help and not to just be pummeled bydoctor after doctor.Usually a lot of muscle spasms I think indicate thatyou may have some serious malabsorption going on--likepotassium, calcium, magnesium. If there is a reasonfor the malabsorption, a problem in your smallintestine where enzymes are produced for example thathelp to absorb and digest nutrients, you

will not beable to just take vitamins and minerals and fix it asyour body is not functioning correctly. All overmuscle spasms also indicates nerve involvement.My spasms all went away when I found that I was glutensensitive, and when I stopped eating gluten (anddairy) they went away almost immediately."Can Pelvic floor dysfunction get this bad?"No!!!!! I would say you don't have "pelvic floordysfunction". Certainly your pelvic floor may not befunctioning if it is spasming but to call a symptom aname is to mislead, misrepresent, and prevent healing.Do they call spasms in your back and neck andshoulders and lower face, "Back, Neck, Shoulder, andLower Face Dysfunction". No! Actually they may callthe Lower Face spasms TMJ. You definitely have aproblem.I seriously suggest that you spend $118.00 dollars andorder a Gluten Sensitivity test fromhttp:/www.enterolab.com. This lab

is the only onewhere you can get a thoroughly accurate test and thereasons for this are varied and somewhat complex. Ifyou wish to know the reason read the essay entitled"Before the Villi Are Gone" by the doctor who owns thelab that is on the website. If this test is positiveyou will likely know most of what is wrong with you.It will be the best investment that you ever made Isuspect. The blood tests the doctor will give you arenot accurate and are a waste of time. You need toexplore this on your own. If they knew what washappening to you and could fix it, they would. Theydon't know and can't. My husband calls this passingthe buck a not very polite name--circle jerk.Stay well.Arline--- snofyre00 <snofyre00> wrote:> My pelvic muscles spasm so badly, that they spread> clear up my back, to > my neck, shoulders and

lower face.> > Can Pelvic floor dysfunction get this bad?__________________________________________________

[Guest guest]

Hi,

I just want to add that I was diagnosed with

Fibromyalgia. That particular word in my opinion is

just another name that they put on symptoms. It of

course means " musle pain " . I suggest that anybody who

has been diagnosed with fibro should be also stool

tested for gluten sensitivity or for Crohn's or for

something else. Something causes this and it isn't

anything called Fibromyalgia. That just describes the

symptom (one of them and FM has a whole slew of them

that sound like Gluten Sensitivity). It really made me

angry when I was told that there was no cure for

Fibromyalgia as I figured if they don't know what

causes it they sure don't know whether it is incurable

or not. I was right.

Take whatever treatment one wishes but try to find out

what is causing it. If you don't you will have trouble

all your life.

As I said taking supplements will not fix the problem

because it is likely your small intestine is damaged

beyond being able to absorb any supplement and that

causes the problem. It isn't that you don't eat any of

these nutrients. It is that the body can't absorb

them. If you fix the problem you don't need any

physical therapy or pills or anything else. I hope you

can do that.

Just my opinion,

Arline

__________________________________________________

[Guest guest]

Hi,

I just want to add that I was diagnosed with

Fibromyalgia. That particular word in my opinion is

just another name that they put on symptoms. It of

course means " musle pain " . I suggest that anybody who

has been diagnosed with fibro should be also stool

tested for gluten sensitivity or for Crohn's or for

something else. Something causes this and it isn't

anything called Fibromyalgia. That just describes the

symptom (one of them and FM has a whole slew of them

that sound like Gluten Sensitivity). It really made me

angry when I was told that there was no cure for

Fibromyalgia as I figured if they don't know what

causes it they sure don't know whether it is incurable

or not. I was right.

Take whatever treatment one wishes but try to find out

what is causing it. If you don't you will have trouble

all your life.

As I said taking supplements will not fix the problem

because it is likely your small intestine is damaged

beyond being able to absorb any supplement and that

causes the problem. It isn't that you don't eat any of

these nutrients. It is that the body can't absorb

them. If you fix the problem you don't need any

physical therapy or pills or anything else. I hope you

can do that.

Just my opinion,

Arline

__________________________________________________

[Guest guest]

Hi,

I just want to add that I was diagnosed with

Fibromyalgia. That particular word in my opinion is

just another name that they put on symptoms. It of

course means " musle pain " . I suggest that anybody who

has been diagnosed with fibro should be also stool

tested for gluten sensitivity or for Crohn's or for

something else. Something causes this and it isn't

anything called Fibromyalgia. That just describes the

symptom (one of them and FM has a whole slew of them

that sound like Gluten Sensitivity). It really made me

angry when I was told that there was no cure for

Fibromyalgia as I figured if they don't know what

causes it they sure don't know whether it is incurable

or not. I was right.

Take whatever treatment one wishes but try to find out

what is causing it. If you don't you will have trouble

all your life.

As I said taking supplements will not fix the problem

because it is likely your small intestine is damaged

beyond being able to absorb any supplement and that

causes the problem. It isn't that you don't eat any of

these nutrients. It is that the body can't absorb

them. If you fix the problem you don't need any

physical therapy or pills or anything else. I hope you

can do that.

Just my opinion,

Arline

__________________________________________________

[Guest guest]

snofyre00 wrote:

>

> My pelvic muscles spasm so badly, that they spread clear up my back, to

> my neck, shoulders and lower face.

>

> Can Pelvic floor dysfunction get this bad?

>

> I have been advised to seek some muscular skeletal resources, but dont

> know which to do first.

>

> I can literally feel the spasms contract around my bladder, then travel

> up to lower back, to the neck and shoulders and lower face. Feels like

> someone has bashed me all over with a baseball bat.

>

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

OMG, this is no time to be sitting around theorizing about what

may or might have caused the present condition! That is

irresponsible!

You need to get immediate help stopping the spasms (YES, It CAN

get this bad!) Your best hope is biofeedback, since this is a serious

case. But in the meantime, you should try to get valium suppositories

or even injections.

It really doesn't matter what might have initially " caused " the

spasms which have now gotten so bad. (That's like asking

a crash victim who is bleeding to death " I wonder what could

have caused such a nasty cut? " FIRST you stop the blood

hemorrhaging, THEN you can speculate about the cause!)

I agree, you have every right to be angry with the doctor

who told you to go to a pain clinic in 3 months. She should

be reported to the county medical society.

If you post your home town, other members of this list

may be able to comment on who's available for competent

physical therapy. Less than 1 in a dozen PTs know anything

about pelvic muscle spasms, and less than half of THEM

know how to do biofeedback.

And good luck and best wishes for you PFPT starting this

week!

, PhD

Certified in General Biofeedback and Pelvic Floor Biofeedback

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

>

> I am going to a pelvic floor phys therapist this week, but my pain is

> so severe now that I am taking pain pills.

>

> I asked my vulvar dr about trying some muscle relaxants until I get

> more evluations, but she said.. " oh those meds are out of my league and

> knowledge. " the only thing she would do is tell me to try neurontin

> and get into the pain clinic, 3 months from now.!!

>

> I am so mad at her. If she doesnt know much about meds, what is she

> doing in this field?

>

> Meanwhile I am in SEVERE pain and supposed to sit around for 3 months ,

> waiting to get into a pain clinicl.

>

> My vulvar dr did absolutely no PELVIC FLOOR EVAL, EITHER

>

> My boss told me to go to my GP for help: that he might help me decide

> what to try for the spasms, until I obtain a more definitive diagnosis.

>

> I am furious for having to spend tons of money to get passed from dr to

> dr. with no clear action. Plus I cant just sit in severe pain for 3

> more months.

>

> Anyone had these body muscle spasms before or have any ideas how I can

> get the ball rolling for help?

>

> Thanks so much.. snofyre00@... <mailto:snofyre00%40yahoo.com>

>

>

> Messages in this topic

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[Guest guest]

snofyre00 wrote:

>

> My pelvic muscles spasm so badly, that they spread clear up my back, to

> my neck, shoulders and lower face.

>

> Can Pelvic floor dysfunction get this bad?

>

> I have been advised to seek some muscular skeletal resources, but dont

> know which to do first.

>

> I can literally feel the spasms contract around my bladder, then travel

> up to lower back, to the neck and shoulders and lower face. Feels like

> someone has bashed me all over with a baseball bat.

>

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

OMG, this is no time to be sitting around theorizing about what

may or might have caused the present condition! That is

irresponsible!

You need to get immediate help stopping the spasms (YES, It CAN

get this bad!) Your best hope is biofeedback, since this is a serious

case. But in the meantime, you should try to get valium suppositories

or even injections.

It really doesn't matter what might have initially " caused " the

spasms which have now gotten so bad. (That's like asking

a crash victim who is bleeding to death " I wonder what could

have caused such a nasty cut? " FIRST you stop the blood

hemorrhaging, THEN you can speculate about the cause!)

I agree, you have every right to be angry with the doctor

who told you to go to a pain clinic in 3 months. She should

be reported to the county medical society.

If you post your home town, other members of this list

may be able to comment on who's available for competent

physical therapy. Less than 1 in a dozen PTs know anything

about pelvic muscle spasms, and less than half of THEM

know how to do biofeedback.

And good luck and best wishes for you PFPT starting this

week!

, PhD

Certified in General Biofeedback and Pelvic Floor Biofeedback

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

>

> I am going to a pelvic floor phys therapist this week, but my pain is

> so severe now that I am taking pain pills.

>

> I asked my vulvar dr about trying some muscle relaxants until I get

> more evluations, but she said.. " oh those meds are out of my league and

> knowledge. " the only thing she would do is tell me to try neurontin

> and get into the pain clinic, 3 months from now.!!

>

> I am so mad at her. If she doesnt know much about meds, what is she

> doing in this field?

>

> Meanwhile I am in SEVERE pain and supposed to sit around for 3 months ,

> waiting to get into a pain clinicl.

>

> My vulvar dr did absolutely no PELVIC FLOOR EVAL, EITHER

>

> My boss told me to go to my GP for help: that he might help me decide

> what to try for the spasms, until I obtain a more definitive diagnosis.

>

> I am furious for having to spend tons of money to get passed from dr to

> dr. with no clear action. Plus I cant just sit in severe pain for 3

> more months.

>

> Anyone had these body muscle spasms before or have any ideas how I can

> get the ball rolling for help?

>

> Thanks so much.. snofyre00@... <mailto:snofyre00%40yahoo.com>

>

>

> Messages in this topic

>

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>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

>

> Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

> to search our archives, files, articles, etc.

>

> ***

[Guest guest]

snofyre00 wrote:

>

> My pelvic muscles spasm so badly, that they spread clear up my back, to

> my neck, shoulders and lower face.

>

> Can Pelvic floor dysfunction get this bad?

>

> I have been advised to seek some muscular skeletal resources, but dont

> know which to do first.

>

> I can literally feel the spasms contract around my bladder, then travel

> up to lower back, to the neck and shoulders and lower face. Feels like

> someone has bashed me all over with a baseball bat.

>

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

OMG, this is no time to be sitting around theorizing about what

may or might have caused the present condition! That is

irresponsible!

You need to get immediate help stopping the spasms (YES, It CAN

get this bad!) Your best hope is biofeedback, since this is a serious

case. But in the meantime, you should try to get valium suppositories

or even injections.

It really doesn't matter what might have initially " caused " the

spasms which have now gotten so bad. (That's like asking

a crash victim who is bleeding to death " I wonder what could

have caused such a nasty cut? " FIRST you stop the blood

hemorrhaging, THEN you can speculate about the cause!)

I agree, you have every right to be angry with the doctor

who told you to go to a pain clinic in 3 months. She should

be reported to the county medical society.

If you post your home town, other members of this list

may be able to comment on who's available for competent

physical therapy. Less than 1 in a dozen PTs know anything

about pelvic muscle spasms, and less than half of THEM

know how to do biofeedback.

And good luck and best wishes for you PFPT starting this

week!

, PhD

Certified in General Biofeedback and Pelvic Floor Biofeedback

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

>

> I am going to a pelvic floor phys therapist this week, but my pain is

> so severe now that I am taking pain pills.

>

> I asked my vulvar dr about trying some muscle relaxants until I get

> more evluations, but she said.. " oh those meds are out of my league and

> knowledge. " the only thing she would do is tell me to try neurontin

> and get into the pain clinic, 3 months from now.!!

>

> I am so mad at her. If she doesnt know much about meds, what is she

> doing in this field?

>

> Meanwhile I am in SEVERE pain and supposed to sit around for 3 months ,

> waiting to get into a pain clinicl.

>

> My vulvar dr did absolutely no PELVIC FLOOR EVAL, EITHER

>

> My boss told me to go to my GP for help: that he might help me decide

> what to try for the spasms, until I obtain a more definitive diagnosis.

>

> I am furious for having to spend tons of money to get passed from dr to

> dr. with no clear action. Plus I cant just sit in severe pain for 3

> more months.

>

> Anyone had these body muscle spasms before or have any ideas how I can

> get the ball rolling for help?

>

> Thanks so much.. snofyre00@... <mailto:snofyre00%40yahoo.com>

>

>

> Messages in this topic

>

<http://groups.yahoo.com/group/VulvarDisorders/message/57351;_ylc=X3oDMTM0NTltMW\

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> (1) Reply (via web post)

>

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sawNycGx5BHN0aW1lAzExNTgzOTc3MzI-?act=reply & messageNum=57351>

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>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

>

> Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

> to search our archives, files, articles, etc.

>

> ***

[Guest guest]

Thank you for your prompt reponse. I DO have a wonderf pelvic foor therapist scheduled fior next week,but my pain is so severe now that I cry all the time. I will try getting my GP to move on this: do you think I should go to a neurologist also? or where to get evaluted for possible p; neuralgia when I get some pain relief? I accidentally pushed by tail bone in when i was 19 but this whole vulvar thing surfaced a couple yrs ago when I went ofF hrt, had IC before that. Should I try going out to Dr. Weiss in San francisco when I am able? Sorry I am so much pain, that I need some expert advice. J Siegel "drydoc@..." wrote: snofyre00 wrote:>> My pelvic muscles spasm so badly, that they spread clear up my back, to> my neck, shoulders and lower face.>> Can Pelvic floor dysfunction get this bad?>> I have been advised to seek some muscular skeletal resources, but dont> know which to do first.>> I can literally feel the spasms contract around my bladder, then travel> up to lower back, to the neck and shoulders and lower face. Feels like> someone has bashed me all over with a baseball bat.>> ----------------------------------------------------------OMG, this

is no time to be sitting around theorizing about whatmay or might have caused the present condition! That isirresponsible!You need to get immediate help stopping the spasms (YES, It CANget this bad!) Your best hope is biofeedback, since this is a seriouscase. But in the meantime, you should try to get valium suppositoriesor even injections. It really doesn't matter what might have initially "caused" thespasms which have now gotten so bad. (That's like askinga crash victim who is bleeding to death "I wonder what couldhave caused such a nasty cut?" FIRST you stop the bloodhemorrhaging, THEN you can speculate about the cause!)I agree, you have every right to be angry with the doctorwho told you to go to a pain clinic in 3 months. She shouldbe reported to the county medical society.If you post your home town, other members of this listmay be able to comment on who's available for

competentphysical therapy. Less than 1 in a dozen PTs know anythingabout pelvic muscle spasms, and less than half of THEMknow how to do biofeedback.And good luck and best wishes for you PFPT starting thisweek! , PhDCertified in General Biofeedback and Pelvic Floor Biofeedback---------------------------------------------------------->> I am going to a pelvic floor phys therapist this week, but my pain is> so severe now that I am taking pain pills.>> I asked my vulvar dr about trying some muscle relaxants until I get> more evluations, but she said.."oh those meds are out of my league and> knowledge." the only thing she would do is tell me to try neurontin> and get into the pain clinic, 3 months from now.!!>> I am so mad at her. If she doesnt know much about meds, what is she> doing in this field?>>

Meanwhile I am in SEVERE pain and supposed to sit around for 3 months ,> waiting to get into a pain clinicl.>> My vulvar dr did absolutely no PELVIC FLOOR EVAL, EITHER>> My boss told me to go to my GP for help: that he might help me decide> what to try for the spasms, until I obtain a more definitive diagnosis.>> I am furious for having to spend tons of money to get passed from dr to> dr. with no clear action. Plus I cant just sit in severe pain for 3> more months.>> Anyone had these body muscle spasms before or have any ideas how I can> get the ball rolling for help?>> Thanks so much.. snofyre00 <mailto:snofyre00%40yahoo.com>>> > Messages in this topic > <http://groups.yahoo.com/group/VulvarDisorders/message/57351;_ylc=X3oDMTM0NTltMW1nBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRtc2dJZAM1NzM1MQRzZWMDZnRyBHNsawN2dHBjBHN0aW1lAzExNTgzOTc3MzIEdHBjSWQDNTczNTE-> > (1) Reply (via web post) > <http://groups.yahoo.com/group/VulvarDisorders/post;_ylc=X3oDMTJvY2l2ZDUzBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRtc2dJZAM1NzM1MQRzZWMDZnRyBHNsawNycGx5BHN0aW1lAzExNTgzOTc3MzI-?act=reply & messageNum=57351> > | Start a new topic > <http://groups.yahoo.com/group/VulvarDisorders/post;_ylc=X3oDMTJjaGRmYmdqBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNudHBjBHN0aW1lAzExNTgzOTc3MzI-> >> Messages > <http://groups.yahoo.com/group/VulvarDisorders/messages;_ylc=X3oDMTJjbzIwc2xjBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNtc2dzBHN0aW1lAzExNTgzOTc3MzI-> > | Files > <http://groups.yahoo.com/group/VulvarDisorders/files;_ylc=X3oDMTJkaHNtNHJwBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNmaWxlcwRzdGltZQMxMTU4Mzk3NzMy> > | Photos > <http://groups.yahoo.com/group/VulvarDisorders/photos;_ylc=X3oDMTJjMjZoZnY1BF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNwaG90BHN0aW1lAzExNTgzOTc3MzI-> > | Links > <http://groups.yahoo.com/group/VulvarDisorders/links;_ylc=X3oDMTJkcmJzYjY4BF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNsaW5rcwRzdGltZQMxMTU4Mzk3NzMy> > | Database > <http://groups.yahoo.com/group/VulvarDisorders/database;_ylc=X3oDMTJhaGQ1dmVnBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNkYgRzdGltZQMxMTU4Mzk3NzMy> >> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**>>

Our HOME page is http://groups.yahoo.com/group/VulvarDisorders> to search our archives, files, articles, etc.>> ***

[Guest guest]

Thank you for your prompt reponse. I DO have a wonderf pelvic foor therapist scheduled fior next week,but my pain is so severe now that I cry all the time. I will try getting my GP to move on this: do you think I should go to a neurologist also? or where to get evaluted for possible p; neuralgia when I get some pain relief? I accidentally pushed by tail bone in when i was 19 but this whole vulvar thing surfaced a couple yrs ago when I went ofF hrt, had IC before that. Should I try going out to Dr. Weiss in San francisco when I am able? Sorry I am so much pain, that I need some expert advice. J Siegel "drydoc@..." wrote: snofyre00 wrote:>> My pelvic muscles spasm so badly, that they spread clear up my back, to> my neck, shoulders and lower face.>> Can Pelvic floor dysfunction get this bad?>> I have been advised to seek some muscular skeletal resources, but dont> know which to do first.>> I can literally feel the spasms contract around my bladder, then travel> up to lower back, to the neck and shoulders and lower face. Feels like> someone has bashed me all over with a baseball bat.>> ----------------------------------------------------------OMG, this

is no time to be sitting around theorizing about whatmay or might have caused the present condition! That isirresponsible!You need to get immediate help stopping the spasms (YES, It CANget this bad!) Your best hope is biofeedback, since this is a seriouscase. But in the meantime, you should try to get valium suppositoriesor even injections. It really doesn't matter what might have initially "caused" thespasms which have now gotten so bad. (That's like askinga crash victim who is bleeding to death "I wonder what couldhave caused such a nasty cut?" FIRST you stop the bloodhemorrhaging, THEN you can speculate about the cause!)I agree, you have every right to be angry with the doctorwho told you to go to a pain clinic in 3 months. She shouldbe reported to the county medical society.If you post your home town, other members of this listmay be able to comment on who's available for

competentphysical therapy. Less than 1 in a dozen PTs know anythingabout pelvic muscle spasms, and less than half of THEMknow how to do biofeedback.And good luck and best wishes for you PFPT starting thisweek! , PhDCertified in General Biofeedback and Pelvic Floor Biofeedback---------------------------------------------------------->> I am going to a pelvic floor phys therapist this week, but my pain is> so severe now that I am taking pain pills.>> I asked my vulvar dr about trying some muscle relaxants until I get> more evluations, but she said.."oh those meds are out of my league and> knowledge." the only thing she would do is tell me to try neurontin> and get into the pain clinic, 3 months from now.!!>> I am so mad at her. If she doesnt know much about meds, what is she> doing in this field?>>

Meanwhile I am in SEVERE pain and supposed to sit around for 3 months ,> waiting to get into a pain clinicl.>> My vulvar dr did absolutely no PELVIC FLOOR EVAL, EITHER>> My boss told me to go to my GP for help: that he might help me decide> what to try for the spasms, until I obtain a more definitive diagnosis.>> I am furious for having to spend tons of money to get passed from dr to> dr. with no clear action. Plus I cant just sit in severe pain for 3> more months.>> Anyone had these body muscle spasms before or have any ideas how I can> get the ball rolling for help?>> Thanks so much.. snofyre00 <mailto:snofyre00%40yahoo.com>>> > Messages in this topic > <http://groups.yahoo.com/group/VulvarDisorders/message/57351;_ylc=X3oDMTM0NTltMW1nBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRtc2dJZAM1NzM1MQRzZWMDZnRyBHNsawN2dHBjBHN0aW1lAzExNTgzOTc3MzIEdHBjSWQDNTczNTE-> > (1) Reply (via web post) > <http://groups.yahoo.com/group/VulvarDisorders/post;_ylc=X3oDMTJvY2l2ZDUzBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRtc2dJZAM1NzM1MQRzZWMDZnRyBHNsawNycGx5BHN0aW1lAzExNTgzOTc3MzI-?act=reply & messageNum=57351> > | Start a new topic > <http://groups.yahoo.com/group/VulvarDisorders/post;_ylc=X3oDMTJjaGRmYmdqBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNudHBjBHN0aW1lAzExNTgzOTc3MzI-> >> Messages > <http://groups.yahoo.com/group/VulvarDisorders/messages;_ylc=X3oDMTJjbzIwc2xjBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNtc2dzBHN0aW1lAzExNTgzOTc3MzI-> > | Files > <http://groups.yahoo.com/group/VulvarDisorders/files;_ylc=X3oDMTJkaHNtNHJwBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNmaWxlcwRzdGltZQMxMTU4Mzk3NzMy> > | Photos > <http://groups.yahoo.com/group/VulvarDisorders/photos;_ylc=X3oDMTJjMjZoZnY1BF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNwaG90BHN0aW1lAzExNTgzOTc3MzI-> > | Links > <http://groups.yahoo.com/group/VulvarDisorders/links;_ylc=X3oDMTJkcmJzYjY4BF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNsaW5rcwRzdGltZQMxMTU4Mzk3NzMy> > | Database > <http://groups.yahoo.com/group/VulvarDisorders/database;_ylc=X3oDMTJhaGQ1dmVnBF9TAzk3MzU5NzE0BGdycElkAzQxMDUwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDZnRyBHNsawNkYgRzdGltZQMxMTU4Mzk3NzMy> >> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**>>

Our HOME page is http://groups.yahoo.com/group/VulvarDisorders> to search our archives, files, articles, etc.>> ***

[Guest guest]

Molly R,

PT is not the answer for every patient who has fibro. PT can

actually be harmful for some people who have fibro. Also, if

one thinks that they have fibro they must be evaluated by a

rheumatologist.

This is especially important if that person ever needs to go on

disability thru SS. SS will not accept the word from anyone but

a rheumatologist when it comes to a fibro diagnosis.

But for those who have fibro and can benefit from PT such as the

girls that you have helped that's good.

Kristy

__________________________________________________

[Guest guest]

Fibromyalgia is a real medical problem and was recognized as

such by the American College of Rheumatology.

But I do agree that if one can to pls get checked for Celiac b/c

going gluten free can ease the fibro symptoms for some. Also,

it is imperative that one who has a diagnosis of fibro get

checked for thyroid disorders and I mean the entire panel not

just TSH b/c the TSH level doesn't tell the whole story about

what may be going on with the thyroid.

I am in the process of doing this whenever I find myself a

primary care physician. And then eventually to get checked for

IC b/c I know I'm also at risk for that due to the fact that I

also have endometriosis.

Kristy

__________________________________________________

[Guest guest]

HI hon...... Boy that advice from Dr. is excellent hon and he's absolutely correct and what a way to look at it.

''It really doesn't matter what might have initially "caused" thespasms which have now gotten so bad. (That's like askinga crash victim who is bleeding to death "I wonder what couldhave caused such a nasty cut?" FIRST you stop the bloodhemorrhaging, THEN you can speculate about the cause!)''

TOTALLY agree and I'll be darned if I'd be waiting if I had to go to the emergency room... you need something PDQ to help hon whether for now it's the Valium or Xanax or a muscle relaxer... but you've GOT to stop that pain cycle pretty quick as the longer it goes the more damage is being done, then you can work on the why of it. I'm just so sorry

Hugs hon, hang in there!

Dee~

[Guest guest]

Hi Kristy,

Of course the American Medical College of Rheumatology

has recgnized it. Now they can have a whole industry

around it. Why haven't they found the cause and the

cure? They aren't looking but are having so much

success prescribing and collecting.

I have read all the books, most of the research, been

to many many of the support group meetings, taken the

muscle relaxants, magnesium, supplements, etc. All the

information and books I had were sold at a garage sale

years ago. Muscle pain is a real medical problem where

one needs to find out what the primary disease is.

I understand that people who have this are relieved to

have a " diagnosis " as I was. We can argue forever

about it but I urge people to entertain the notion

that they are being scammed.

Just my opinion.

Arline ;o)

> Fibromyalgia is a real medical problem and was

> recognized as

> such by the American College of Rheumatology.

__________________________________________________

[Guest guest]

Arline,

It is being studied. It takes time to find the cure b/c the

cause is so varied for each person. But one common cause is

physical trauma to the body such as having surgery like

hysterectomy.

Also, fibromyalgia is a neuromuscular problem for most who have

it.

But yes it is being looked in to to try and find the answers to

fibro, and for some going Gluten free is the answer but I don't

know if that is being accounted for in the studies. I hope so.

In the books that you have read, and in the support groups you

have been to have they ever talked about malic acid being good

for fibro?

I don't hear much about magnesium being used for fibro.

But for sure some people need to be checked for Celiac to see if

they have it and go gluten free to see if it helps them. That

will eventually be one of my tasks but it's at the bottom of the

list of priorities right now.

And whenever I get a job it will work its way toward the top of

the list. Thanks for reminding everyone about Gluten

sensitivity b/c I wonder how many may actually have this problem

since it is so often considered as rare in this country by a lot

of drs.

Kristy

__________________________________________________

[Guest guest]

Hi Kristy,

> In the books that you have read, and in the support

> groups you

> have been to have they ever talked about malic acid

> being good

> for fibro?

>

> I don't hear much about magnesium being used for

>

Yes, I took Malic Acid until I was cross eyed. Ate

lots of apples, too.

Magnesium is about pain.

http://www.usaweekend.com/02_issues/020901/020901eatsmart.html

http://www.trendmaker.com/fun/v6fun03/

http://www.healingwithnutrition.com/fdisease/fibromyalgia/magnesiumstudy.html

(It's a scam. My opinion) )

>

> It is being studied.

Yes, about five years ago a study came out in

Philadelphia that indicated that diet had everything

to do with it.

It takes time to find the cure

> b/c the

> cause is so varied for each person.

Nobody is really looking.

But one common

> cause is

> physical trauma to the body such as having surgery

> like

> hysterectomy.

Nonsense.

>

> Also, fibromyalgia is a neuromuscular problem for

> most who have

> it.

That is right and what causes it?

>

> But yes it is being looked in to to try and find the

> answers to

> fibro,

I don't think so.

and for some going Gluten free is the answer

> but I don't

> know if that is being accounted for in the studies.

What is being accounted for in the studies? I trust

nothing that they can do anything about--just wild

statements about trauma, etc. that can't be proven.

> In the books that you have read, and in the support

> groups you

> have been to have they ever talked about malic acid

> being good

> for fibro?

>

> I don't hear much about magnesium being used for

> fibro.

>

> But for sure some people need to be checked for

> Celiac to see if

> they have it and go gluten free to see if it helps

> them. That

> will eventually be one of my tasks but it's at the

> bottom of the

> list of priorities right now.

Too bad, Kristy.

>

> And whenever I get a job it will work its way toward

> the top of

> the list. Thanks for reminding everyone about

> Gluten

> sensitivity b/c I wonder how many may actually have

> this problem

> since it is so often considered as rare in this

> country by a lot

> of drs.

It is absolutely epidemic and not rare. Symptoms of FM

are the same as for Celiac.

Arline

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[Guest guest]

Hi Snofyre,

I hope you find some help with the doctors. It is

certainly obvious and it goes without saying that when

you need pain relief you should get it. Perhaps they

can change the two medications you are using to

something more effective. Hopefully so. In any case I

wish you good health and much better days.

Arline

--- Snofyre wrote:

> Dee I have been taking some fioricet and some

> lorazepam.. waiting to get in to the dr. But I am

> going to my GP tommorow and really putting it to

> him.. to do something now. thanks.. I need prayers

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[Guest guest]

I dont have fibro but I have hpo thyroid, Which exact test do I ask for, for the thyroid test panel, not just the regular TSH test? Thanks snofyre00Kristy Sokoloski wrote: Fibromyalgia is a real medical problem and was recognized assuch by the American College of Rheumatology.But I do agree that if one can to pls get checked for Celiac b/cgoing gluten free can ease the fibro symptoms for some. Also,it is imperative that one who has a diagnosis of

fibro getchecked for thyroid disorders and I mean the entire panel notjust TSH b/c the TSH level doesn't tell the whole story aboutwhat may be going on with the thyroid. I am in the process of doing this whenever I find myself aprimary care physician. And then eventually to get checked forIC b/c I know I'm also at risk for that due to the fact that Ialso have endometriosis.Kristy __________________________________________________

[Guest guest]

who is the dr who owns this website? H. Gleazer? thanks :)BABB wrote: Hi,For many years I had muscle spasms all over my body.The ones in my back caused me the most problem.I think you should be looking for a condition thatcauses it and not just take medicine to control thesymptoms although if you are in pain, and you are,take what you need. Your idea is right about needingsome ideas and help and not to just be pummeled

bydoctor after doctor.Usually a lot of muscle spasms I think indicate thatyou may have some serious malabsorption going on--likepotassium, calcium, magnesium. If there is a reasonfor the malabsorption, a problem in your smallintestine where enzymes are produced for example thathelp to absorb and digest nutrients, you will not beable to just take vitamins and minerals and fix it asyour body is not functioning correctly. All overmuscle spasms also indicates nerve involvement.My spasms all went away when I found that I was glutensensitive, and when I stopped eating gluten (anddairy) they went away almost immediately."Can Pelvic floor dysfunction get this bad?"No!!!!! I would say you don't have "pelvic floordysfunction". Certainly your pelvic floor may not befunctioning if it is spasming but to call a symptom aname is to mislead, misrepresent, and prevent healing.Do they call

spasms in your back and neck andshoulders and lower face, "Back, Neck, Shoulder, andLower Face Dysfunction". No! Actually they may callthe Lower Face spasms TMJ. You definitely have aproblem.I seriously suggest that you spend $118.00 dollars andorder a Gluten Sensitivity test fromhttp:/www.enterolab.com. This lab is the only onewhere you can get a thoroughly accurate test and thereasons for this are varied and somewhat complex. Ifyou wish to know the reason read the essay entitled"Before the Villi Are Gone" by the doctor who owns thelab that is on the website. If this test is positiveyou will likely know most of what is wrong with you.It will be the best investment that you ever made Isuspect. The blood tests the doctor will give you arenot accurate and are a waste of time. You need toexplore this on your own. If they knew what washappening to you and could fix it, they would.

Theydon't know and can't. My husband calls this passingthe buck a not very polite name--circle jerk.Stay well.Arline--- snofyre00 <snofyre00> wrote:> My pelvic muscles spasm so badly, that they spread> clear up my back, to > my neck, shoulders and lower face.> > Can Pelvic floor dysfunction get this bad?__________________________________________________

[Guest guest]

Arline,

It is not nonsense that surgery can cause trauma to the body

such as a hysterectomy. I know of quite a few women that it

happened to.

And yes, there are some out there looking for more answers to

the issue of fibromyalgia when it comes to a cure even though it

may not seem like it. We still have a ways to go in

understanding all the aspects of fibro b/c there are other

connecting factors to it such as vulvar vestibulitis syndrome

for some women as well as Celiac for others as you have

mentioned.

I do agree that the thing about magnesium and the connection to

pain is a scam. I've heard of it being mentioned before as a

way to supposedly help menstrual cramps. One girl that I had

talked to that I knew might have endo said her dr kept telling

her to take magnesium for the cramps and it wasn't helping, when

she had a lap with a different dr, sure enough she had endo.

I'm not sure what all is being accounted for in some of the

studies I know about. I've wondered the same thing and I agree

that if they aren't including gluten sensitivity as part of it

then they aren't getting the complete pic as it may apply to

some people. I would have to check with the Medical Library

here to see what I can find and also check PubMed and such to

see what some of the other studies are out there to see what

they are taking in to account in the studies both on a large and

small scale.

Actually it's not too bad that being checked for Celiac is at

the bottom of the list of priorities for me right now. And the

reason it is is b/c of money issues. I don't have a job right

now. And when I do have one I will get that tended to. I want

to get it done but I can't do it now. Once I get a job and take

care of some of my other priorities then the checking for Celiac

will get moved up b/c I do believe it needs to be done. Just

not as top priority at this time.

Oh I definitely agree that it is not rare in this country and

that it is an epidemic issue but for most drs in this country

b/c of the way they are trained (if trained here in the U.S.) it

is considered rare and it shouldn't be.

Symptoms of FM are also the symptoms of thyroid problems.

I did meet a couple of ladies that have fibro and went gluten

free and some of their pain eased up but they all said that they

still have fibro.

But so you know when I hear of someone on other lists that say

that have sensitivies to wheat and such I beg them to get

checked for Celiac b/c of that. As I think I told you one time

one girl tried to tell me that just b/c she couldn't handle

wheat that didn't mean that she was gluten intolerant. I argued

with her on it for a while b/c of the info that you have shared

on the subject and also what I've read at the Gluten Free Pantry

site and one other place.

There was one book I would love to get but I can't b/c again I

don't have the money but will get whenever I get a job as well.

It was called The Gluten Free Kitchen and it looked very

interesting from what I could tell when I saw it at the Health

Food Store a while back.

I will let you know when I am able to get tested and whether or

not it plays in to my issues after I get some of the other

issues healthwise I have possibly going tended to.

Thank you for making us aware of the seriousness of the issue,

especially after when I first heard about it from a friend whose

son has it.

Kristy

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