Re: Fibro not a disease

[Guest guest]

Funny, my doctor's call it a disease, so did my lawyer for my SSI. Yes one of my doctor's is a Rheumatoid or Arthritic Doctor. He comes from Pitt. PA to see me. I think its still a disease, it ruined my life. Christie -- Fibro not a disease Do you know that fibromyalgia isn't even classed as a disease by the Arthritis Foundation? It is called a "syndrome" just as Rhumatoid Arthritis. They have no idea how it is caused, etc. etc. etc. I'll tell you one thing I have no "Syndrome" nor does my friend who has Rhumatoid Arthritis want to hear she has a "Syndrome." Fibro and RA are grouped together. I worked in the yard day before yesterday and yesterday. I AM PAYING FOR IT NOW. Those two days were good days and I didn't want to waste them. I just wish I wouldn't get hit double hard when I do work at something I love. I have a herniated disk and bad spinal stenosis, plus arthritis everywhere, (not rhumatoid however, thank goodness) and my enemy fibro! I have done nothing but rest today. I feel like I'm older than dirt, (maybe not far from it, I'm 60.) The tv has become my dear friend. No one understands how I can be in good shape for a couple days or even a half a day and then the next day or by that afternoon be in such terrible pain. Unless someone has this they just don't understand. (Old lady stepping down from the pity party box and going home) Thanks for listening, Carla in Arizona -------Original Message------- Reply-To: Fibromyalgia_Support_Group To: fibromyalgia_support_group Subject: newbieDate: Sat, 27 May 2006 03:38:03 -0700 (PDT) Thanks for inviting me to your group. I was diagnosed in 1981 with fibromyalgia and at that time it was all in my head. Now it is recognized as a real disease. I can still do something active for about 4 hours. I push myself to keep moving and some days I pay dearly for it. Like today I'm volunteering at the reggie block party downtown I know I'm going to pay for it but I'm going to have some fun even if I will have a pocket of med to get me through it. michelle

[Guest guest]

I have been just recently diagnoised and my Dr. calls it a disease and so does my lawyers. Problem is I am only 29. I have have RA and it is a disease. One that is inherited sometimes which is how I got it. I have an 8 year old that I try to keep up and that had to learn at a young age that mommy can not do what other mommies can and let me tell you it hurts. I know what you are talking about the good days and then wham you get hit like a mac truck. It has ruined my life. I just fight to stay on my feet and I am loosing that battle slowly and unless you have this disease you honestly feel alone because nobody understands. Sorry for the pitty party. Thank you DawnChristie wrote: Funny, my doctor's call it a disease, so did my lawyer for my SSI. Yes one of my doctor's is a Rheumatoid or Arthritic Doctor. He comes from Pitt. PA to see me. I think its still a disease, it ruined my life. Christie -- Fibro not a disease Do you know that fibromyalgia isn't even classed as a disease by the Arthritis Foundation? It is called a "syndrome" just as Rhumatoid Arthritis. They have no idea how it is caused, etc. etc. etc. I'll tell you one thing I have no "Syndrome" nor does my friend who has Rhumatoid Arthritis want to hear she has a "Syndrome." Fibro and RA are grouped together. I worked in the yard day before yesterday and yesterday. I AM PAYING FOR IT NOW. Those

two days were good days and I didn't want to waste them. I just wish I wouldn't get hit double hard when I do work at something I love. I have a herniated disk and bad spinal stenosis, plus arthritis everywhere, (not rhumatoid however, thank goodness) and my enemy fibro! I have done nothing but rest today. I feel like I'm older than dirt, (maybe not far from it, I'm 60.) The tv has become my dear friend. No one understands how I can be in good shape for a couple days or even a half a day and then the next day or by that afternoon be in such terrible pain. Unless someone has this they just don't understand. (Old lady stepping down from the pity party box and going home) Thanks for listening, Carla in Arizona -------Original Message------- Reply-To: Fibromyalgia_Support_Group To: fibromyalgia_support_group Subject: newbieDate: Sat, 27 May 2006 03:38:03 -0700 (PDT) Thanks for inviting me to your group. I was diagnosed in 1981 with fibromyalgia and at that time it was all in my head. Now it is recognized as a real disease. I can still do something active for about 4 hours. I push myself to keep moving and some days I pay dearly for it. Like today I'm volunteering at the reggie block party downtown I know I'm going to pay for it but I'm going to have some fun even if I will have a pocket of med to get me through it. michelle

[Guest guest]

This is pretty hard hitting as an image, but it makes the point that it doesn't really matter whether FM, etc. is a disease or a syndrome. This is not intended to upset anyone, but to give a clear picture that can be taken to doctors, lawyers, family members, etc. who may try to deny the seriousness of the "condition" because they quibble over whether its a disease or a syndrome. A baby who dies from Sudden Infant Death Syndrome is no less dead because there was no known causeof death. By the way, my rheumy recently told me that research shows it IS a neurological condition...thats why so many body systems are affected...nerves go everywhere in the body, but lots of them go through the muscles, tendons, joints. Its related to MS, but not known to be progressive, and life threatening in the way MS is. River GraceDawn wrote: I have been just recently diagnoised and my Dr. calls it a disease and so does my lawyers. Problem is I am only 29. I have have RA and it is a disease. One that is inherited sometimes which is how I got it. I have an 8 year old that I try to keep up and that had to learn at a young age that mommy can not do what other mommies can and let me tell you it hurts. I know what you are talking about the good days and then wham you get hit like a mac truck. It has ruined my life. I just fight to stay on my feet and I am loosing that battle slowly and unless you have this disease you honestly feel alone because nobody understands. Sorry for the pitty party. Thank you DawnChristie wrote: Funny, my doctor's call it a disease, so did my lawyer for my SSI. Yes one of my doctor's is a Rheumatoid or Arthritic Doctor. He comes from Pitt. PA to see me. I think its still a disease, it ruined my life. Christie -- Fibro not a disease Do you know that fibromyalgia isn't even classed as a disease by the Arthritis Foundation? It is called a "syndrome" just as Rhumatoid Arthritis. They have no idea how it is caused, etc. etc. etc. I'll tell you one thing I have no "Syndrome" nor does my friend who has Rhumatoid Arthritis want to hear she has a "Syndrome." Fibro and RA are grouped together. I worked in the yard day before yesterday and yesterday. I AM PAYING FOR IT NOW. Those two days were good days and I didn't want to waste them. I just wish I wouldn't get hit double hard when I do work at something I love. I have a herniated disk and bad spinal stenosis, plus arthritis everywhere, (not rhumatoid however, thank goodness) and my enemy fibro! I have done nothing but rest today. I feel like I'm older than dirt, (maybe not far from it, I'm 60.) The tv has become my dear friend. No one understands how I can be in good shape for a couple days or even a half a day and then the next day or by that afternoon be in such terrible pain. Unless someone has this they just don't understand. (Old lady stepping down from the pity party box and going home) Thanks for listening, Carla in Arizona -------Original Message------- Reply-To: Fibromyalgia_Support_Group To: fibromyalgia_support_group Subject: newbieDate: Sat, 27 May 2006 03:38:03 -0700 (PDT) Thanks for inviting me to your group. I was diagnosed in 1981 with fibromyalgia and at that time it was all in my head. Now it is recognized as a real disease. I can still do something active for about 4 hours. I push myself to keep moving and some days I pay dearly for it. Like today I'm volunteering at the reggie block party downtown I know I'm going to pay for it but I'm going to

have some fun even if I will have a pocket of med to get me through it. michelle

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[Guest guest]

I didn't know it was related to MS. Scares me more now then ever. My aunt had MS. Makes sense though as to how these pains pop up every where and then like a short circuit, spit and fire at random. I also had heard there was research into the fact that a virus in the spinal cord could be a cause. Has anyone heard about this???

I also had terrible "growing pains" in my teen years. I was in Pom-Pons in high school. (sort of combination of cheerleading and music routines with those big shinny strips in the hands.) After a game or pep rally. My girlfriend, who also has Fibro, and I were ready to go home and rest from exhaustion and pain, while the others were going out on dates. We didn't understand how they had the energy. My mother, I know had fibro, just wasn't dx.

I went from dr to dr also. Went to two different rhemmy's and was diagnosed with fibro after almost flattening both of them when being tested. However, one rhemmy didn't believe in pain meds and I looked at him and said how does one cope with this terrible pain? at times much much worse then others. I don't believe he even believed there was such an animal as fibro!!

The second rhemmy was very very good to me. However, to save money on co pays I went back to my family doctor. He knew I had fibro immediately. He really understands the problems associated with the disease. My son that died a year ago also had fibro. On top of all the pain he had to endure he also had that. He went to a pain doctor which helped him immensely.

I hope I don't come across as a "know it all" on here. I don't mean to do that. I apologize if I have. Must be the medial training in me. Syndrome.....disease... it all spells PAIN!!

Anyone on here bothered with alot of sinus problems?? Respiratory problems??

Thanks for all the info and listening.

May you all have a pain free day.

Carla in Arizona

Fibro not a disease

Do you know that fibromyalgia isn't even classed as a disease by the Arthritis Foundation? It is called a "syndrome" just as Rhumatoid Arthritis. They have no idea how it is caused, etc. etc. etc.

I'll tell you one thing I have no "Syndrome" nor does my friend who has Rhumatoid Arthritis want to hear she has a "Syndrome." Fibro and RA are grouped together.

I worked in the yard day before yesterday and yesterday. I AM PAYING FOR IT NOW. Those two days were good days and I didn't want to waste them. I just wish I wouldn't get hit double hard when I do work at something I love. I have a herniated disk and bad spinal stenosis, plus arthritis everywhere, (not rhumatoid however, thank goodness) and my enemy fibro! I have done nothing but rest today. I feel like I'm older than dirt, (maybe not far from it, I'm 60.) The tv has become my dear friend. No one understands how I can be in good shape for a couple days or even a half a day and then the next day or by that afternoon be in such terrible pain. Unless someone has this they just don't understand.

(Old lady stepping down from the pity party box and going home)

Thanks for listening,

Carla in Arizona

[Guest guest]

Hmmm, I don't think there is any more reason to be scared of it because its related to MS. This was diagnosed in the 19th century as, I think, others can correct me if I'm wrong, fibrositis. It was recognized, and treated as best they could at the time, with bed rest and pain meds. I think a lot of the wealthy that "went to take the treatments" at some of the natural hot springs spas probably had FM. I have heard the possibility that its caused by a virus, or by a constitutional tendency, or by trauma (physical or emotional). I don't think they really know for sure yet. What I do know, is I've never heard of anyone dying of FM. Yes, I had the terrible "growing pains" and I would come home from track practice in high school and collapse on the sofa, or into bed. It would be hard to walk home from the bus stop. I needed naps all through my teens and twenties, whether I had time to get them or not, and now, at

44, take them whenever I can. Today, I have been pacing with anxiety, and leg pain much like the growing pains were. I have this huge red welt on my chest...wonder what bit me, or if its just part of the anxiety. I have an appt with the rheumy in the morning, so maybe she'll look at it if its still there. I've had a flare up since it got more humid here (Western North Carolina) and more so since it turned hot over the weekend. Last week it was nice, highs in the mid-70's. Today it was almost 90. OK, done with the whine. River GraceCarla Atkins wrote: I didn't know it was related to MS. Scares me more now then ever. My aunt had MS. Makes sense though as to how

these pains pop up every where and then like a short circuit, spit and fire at random. I also had heard there was research into the fact that a virus in the spinal cord could be a cause. Has anyone heard about this??? I also had terrible "growing pains" in my teen years. I was in Pom-Pons in high school. (sort of combination of cheerleading and music routines with those big shinny strips in the hands.) After a game or pep rally. My girlfriend, who also has Fibro, and I were ready to go home and rest from exhaustion and pain, while the others were going out on dates. We didn't understand how they had the energy. My mother, I know had fibro, just wasn't dx. I went from dr to dr also. Went to two different rhemmy's and was diagnosed with fibro after almost flattening both of them when being tested. However, one rhemmy didn't believe in pain meds and I looked at him and said how does one cope with this terrible pain? at times much much worse then others. I don't believe he even believed there was such an animal as fibro!! The second rhemmy was very very good to me. However, to save money on co pays I went back to my family doctor. He knew I had fibro immediately. He really understands the problems associated with the disease. My son that died a year ago also had fibro. On top of all the pain he had to endure he also had that.

He went to a pain doctor which helped him immensely. I hope I don't come across as a "know it all" on here. I don't mean to do that. I apologize if I have. Must be the medial training in me. Syndrome.....disease... it all spells PAIN!! Anyone on here bothered with alot of sinus problems?? Respiratory problems?? Thanks for all the info and listening. May you all have a pain free day. Carla in Arizona Fibro not a disease Do you know that fibromyalgia isn't even classed as a disease by the Arthritis Foundation? It is called a "syndrome" just as Rhumatoid Arthritis. They have no idea how it is caused, etc. etc. etc. I'll tell you one thing I have no "Syndrome" nor does my friend who has Rhumatoid Arthritis want to hear she has a "Syndrome." Fibro and RA are

grouped together. I worked in the yard day before yesterday and yesterday. I AM PAYING FOR IT NOW. Those two days were good days and I didn't want to waste them. I just wish I wouldn't get hit double hard when I do work at something I love. I have a herniated disk and bad spinal stenosis, plus arthritis everywhere, (not rhumatoid however, thank goodness) and my enemy fibro! I have done nothing but rest today. I feel like I'm older than dirt, (maybe not far from it, I'm 60.) The tv has become my dear friend. No one understands how I can be in good shape for a couple days or even a half a day and then the next day or by that afternoon be in such terrible pain. Unless someone has this they just don't understand. (Old

lady stepping down from the pity party box and going home) Thanks for listening, Carla in Arizona

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

I see the link in MS and Fibro to because my husband's family and my

family both have fibromyalgia and Multiple Sclerosis in our

intermediate families....

About the spinal cord...they are finding some 15 protiens that are

not supposed to be in the spinal cord......they are finding problems

withing the white blood cells also. They are proving that FMS

involves several of the bodies systems. I attendended the kNOw More

seminare for CFIDS in Charlotte NC, where researchers flew in to tell

us these things and that it is now proven to be genetic. They have

found it in the genes, a whole strain related to FMS. This means it

will be possible to test for this someday and perhaps make

medications that would be more helpful.

Rheanna

-- In Fibromyalgia_Support_Group , " Carla Atkins "

wrote:

>

> I didn't know it was related to MS. Scares me more now then ever.

My aunt had MS. Makes sense though as to how these pains pop up

every where and then like a short circuit, spit and fire at random.

I also had heard there was research into the fact that a virus in the

spinal cord could be a cause. Has anyone heard about this???

>

> I also had terrible " growing pains " in my teen years. I was in Pom-

Pons in high school. (sort of combination of cheerleading and music

routines with those big shinny strips in the hands.) After a game or

pep rally. My girlfriend, who also has Fibro, and I were ready to go

home and rest from exhaustion and pain, while the others were going

out on dates. We didn't understand how they had the energy. My

mother, I know had fibro, just wasn't dx.

>

> I went from dr to dr also. Went to two different rhemmy's and was

diagnosed with fibro after almost flattening both of them when being

tested. However, one rhemmy didn't believe in pain meds and I looked

at him and said how does one cope with this terrible pain? at times

much much worse then others. I don't believe he even believed there

was such an animal as fibro!!

> The second rhemmy was very very good to me. However, to save money

on co pays I went back to my family doctor. He knew I had fibro

immediately. He really understands the problems associated with the

disease. My son that died a year ago also had fibro. On top of all

the pain he had to endure he also had that. He went to a pain doctor

which helped him immensely.

>

> I hope I don't come across as a " know it all " on here. I don't

mean to do that. I apologize if I have. Must be the medial training

in me. Syndrome.....disease... it all spells PAIN!!

>

> Anyone on here bothered with alot of sinus problems?? Respiratory

problems??

>

> Thanks for all the info and listening.

> May you all have a pain free day.

> Carla in Arizona

>

>

> Fibro not a disease

>

> Do you know that fibromyalgia isn't even classed as a

disease by the Arthritis Foundation? It is called a " syndrome " just

as Rhumatoid Arthritis. They have no idea how it is caused, etc.

etc. etc.

>

> I'll tell you one thing I have no " Syndrome " nor does

my friend who has Rhumatoid Arthritis want to hear she has

a " Syndrome. " Fibro and RA are grouped together.

>

> I worked in the yard day before yesterday and

yesterday. I AM PAYING FOR IT NOW. Those two days were good days

and I didn't want to waste them. I just wish I wouldn't get hit

double hard when I do work at something I love. I have a herniated

disk and bad spinal stenosis, plus arthritis everywhere, (not

rhumatoid however, thank goodness) and my enemy fibro! I have done

nothing but rest today. I feel like I'm older than dirt, (maybe not

far from it, I'm 60.) The tv has become my dear friend. No one

understands how I can be in good shape for a couple days or even a

half a day and then the next day or by that afternoon be in such

terrible pain. Unless someone has this they just don't understand.

>

> (Old lady stepping down from the pity party box and

going home)

> Thanks for listening,

> Carla in Arizona

>

[Guest guest]

You know what is funny guys, none of us really care

what it is, we just don't want to suffer everyday

lol!! Personally, I believe there really is no

difference however, my mother 57 I believe, anyways,

after her fibro diagnosis 15 years ago, she now has

progressive MS so I don't think anyone is really for

sure yet with what fibro is, I can tell you that I

wish they would figure it out as my rheumy cut me off

pain meds and because of my medical, I can't see a

different doc. That is why you all haven't heard much

from me, I am totally suffering through this bs!!!

Sorry I know some have worse issues but the depression

is getting bad and I think this is cruel of them to do

this to me. Any suggestions, I am in Washington State

DEB

--- Ed and Rheanna wrote:

> I see the link in MS and Fibro to because my

> husband's family and my

> family both have fibromyalgia and Multiple Sclerosis

> in our

> intermediate families....

>

> About the spinal cord...they are finding some 15

> protiens that are

> not supposed to be in the spinal cord......they are

> finding problems

> withing the white blood cells also. They are

> proving that FMS

> involves several of the bodies systems. I

> attendended the kNOw More

> seminare for CFIDS in Charlotte NC, where

> researchers flew in to tell

> us these things and that it is now proven to be

> genetic. They have

> found it in the genes, a whole strain related to

> FMS. This means it

> will be possible to test for this someday and

> perhaps make

> medications that would be more helpful.

>

> Rheanna

>

> -- In Fibromyalgia_Support_Group ,

> " Carla Atkins "

> wrote:

> >

> > I didn't know it was related to MS. Scares me

> more now then ever.

> My aunt had MS. Makes sense though as to how these

> pains pop up

> every where and then like a short circuit, spit and

> fire at random.

> I also had heard there was research into the fact

> that a virus in the

> spinal cord could be a cause. Has anyone heard

> about this???

> >

> > I also had terrible " growing pains " in my teen

> years. I was in Pom-

> Pons in high school. (sort of combination of

> cheerleading and music

> routines with those big shinny strips in the hands.)

> After a game or

> pep rally. My girlfriend, who also has Fibro, and I

> were ready to go

> home and rest from exhaustion and pain, while the

> others were going

> out on dates. We didn't understand how they had the

> energy. My

> mother, I know had fibro, just wasn't dx.

> >

> > I went from dr to dr also. Went to two different

> rhemmy's and was

> diagnosed with fibro after almost flattening both of

> them when being

> tested. However, one rhemmy didn't believe in pain

> meds and I looked

> at him and said how does one cope with this terrible

> pain? at times

> much much worse then others. I don't believe he

> even believed there

> was such an animal as fibro!!

> > The second rhemmy was very very good to me.

> However, to save money

> on co pays I went back to my family doctor. He knew

> I had fibro

> immediately. He really understands the problems

> associated with the

> disease. My son that died a year ago also had

> fibro. On top of all

> the pain he had to endure he also had that. He went

> to a pain doctor

> which helped him immensely.

> >

> > I hope I don't come across as a " know it all " on

> here. I don't

> mean to do that. I apologize if I have. Must be

> the medial training

> in me. Syndrome.....disease... it all spells PAIN!!

>

> >

> > Anyone on here bothered with alot of sinus

> problems?? Respiratory

> problems??

> >

> > Thanks for all the info and listening.

> > May you all have a pain free day.

> > Carla in Arizona

> >

> >

> > Fibro not a disease

> >

> > Do you know that fibromyalgia isn't

> even classed as a

> disease by the Arthritis Foundation? It is called a

> " syndrome " just

> as Rhumatoid Arthritis. They have no idea how it is

> caused, etc.

> etc. etc.

> >

> > I'll tell you one thing I have no

> " Syndrome " nor does

> my friend who has Rhumatoid Arthritis want to hear

> she has

> a " Syndrome. " Fibro and RA are grouped together.

> >

> > I worked in the yard day before

> yesterday and

> yesterday. I AM PAYING FOR IT NOW. Those two days

> were good days

> and I didn't want to waste them. I just wish I

> wouldn't get hit

> double hard when I do work at something I love. I

> have a herniated

> disk and bad spinal stenosis, plus arthritis

> everywhere, (not

> rhumatoid however, thank goodness) and my enemy

> fibro! I have done

>

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