Re: Does anyone have Polymyalgia?

[Guest guest]

Cheli, I don't much about polymyalgia rheumatica, but I do know a

little since I had a friend who had it. Unlike RA, it is not supposed

to cause joint damage, but it does cause plenty of joint pain. Also,

it is supposed to go away after several years. So if your diagnosis

has changed from RA to polymyalgia rheumatica, that is good news. My

friend was treated with prednisone.

I'm sure will post some relevant articles. In the meantime, you

could google it.

Sue

On Nov 25, 2009, at 1:33 PM, hlhsinfo@... wrote:

> When I called my general Dr today to ask for a steroid pack for my

> back I was told from a different Dr I had polymyalgia. My regular Dr

> is on vacation so it was like pulling teeth to get a steroid pack. I

> know the risk and if I can't get off my bed or (sorry) wipe myself

> then I need what works for me. Grr!

> So why couldn't my Dr that deals with my RA tell me I had

> polymyalgia! So I'm here asking all of you what is this and what do

> they do for this. I asked my Dr if my back and hip issues have

> anything to do with my RA and he said he thinks it is all muscle

> related and not to do with RA. I'm lost:( I know later in my life I

> might get so bad that I could be in pain everyday from my RA so why

> can't my Dr just give me meds like steroids to give me a break once

> in awhile. I don't think I should have to be in pain everyday if

> there is a fix out there. Sorry I'm in pain and upset that I have to

> feel this way. I know this pain might be mild compared to some of

> you but I can only take so much at times. You can call it having a

> breakdown day. Lol.

[Guest guest]

I'm sorry if I made it sound like I don't have RA still. I still have RA on top

of Polymyalgia.

Thanks for your info. I wish this would go away. Lol.

Cheli

Re: [ ] Does anyone have Polymyalgia?

Cheli, I don't much about polymyalgia rheumatica, but I do know a

little since I had a friend who had it. Unlike RA, it is not supposed

to cause joint damage, but it does cause plenty of joint pain. Also,

it is supposed to go away after several years. So if your diagnosis

has changed from RA to polymyalgia rheumatica, that is good news. My

friend was treated with prednisone.

I'm sure will post some relevant articles. In the meantime, you

could google it.

Sue

[Guest guest]

Maybe it was polymyalgia all the time, and not RA. One can only hope.

Did your rheumy diagnose you with both? My friend was first diagnosed

with RA, and then with polymyalgia. Her rheumy finally discharged her.

She was quite upset, because she thought that she had RA, too, but she

was mistaken.

Sue

On Nov 25, 2009, at 2:00 PM, hlhsinfo@... wrote:

> I'm sorry if I made it sound like I don't have RA still. I still

> have RA on top of Polymyalgia.

>

> Thanks for your info. I wish this would go away. Lol.

> Cheli

[Guest guest]

The tests came back as having RA. I also had onset systemic JRA aka JIA aka

STILL's is what they call it now. I have always had pain since I was a kid. I'm

lucky, so far my joints are ok. I do have a bad back and a bad knee. I have all

my blood tests and records from when I was younger. The Dr that have me my

diagnose when I was little still works. My mom never followed up with her after

the visit so they never treated me for my JRA they normally do. My general Dr

back then thought he knew what he was doing but he didn't. He never took care of

the JRA. I was in pain and so sick when I was little. When I got older I had a

talk with my mom and showed her the file. She had no clue I was so sick. My

liver was so shot I'm shocked I wasn't sicker. My liver is fine now. My splen

was also enlarged back then. I do believe I do have RA. I wish I could say I

didn't. I have been on Plaquenil for a little over a month now. I'm still trying

to wrap my head over all of this. I'm in the why me stage. I have had it very

hard the last 4 years. I'm just waiting for a break. I try to stay positive but

I have my days.

Cheli

Re: [ ] Does anyone have Polymyalgia?

Maybe it was polymyalgia all the time, and not RA. One can only hope.

Did your rheumy diagnose you with both? My friend was first diagnosed

with RA, and then with polymyalgia. Her rheumy finally discharged her.

She was quite upset, because she thought that she had RA, too, but she

was mistaken.

Sue

[Guest guest]

Hi, Cheli.

" Myalgia " is muscle pain, and " polymyalgia " is pain in several muscle

or muscle groups.

There a disorder called " polymyalgia rheumatica, " but it would be

highly unusual for someone your age to have it.

Could the physican have said, " fibromyalgia " ?

Not an MD

On Wed, Nov 25, 2009 at 12:33 PM, <hlhsinfo@...> wrote:

> When I called my general Dr today to ask for a steroid pack for my back I was

told from a different Dr I had polymyalgia. My regular Dr is on vacation so it

was like pulling teeth to get a steroid pack. I know the risk and if I can't get

off my bed or (sorry) wipe myself then I need what works for me. Grr!

>  So why couldn't my Dr that deals with my RA tell me  I had polymyalgia! So

I'm here asking all of you what is this and what do they do for this. I asked my

Dr if my back and hip issues have anything to do with my RA and he said he

thinks it is all muscle related and not to do with RA. I'm lost:( I know later

in my life I might get so bad that I could be in pain everyday from my RA so why

can't my Dr just give me meds like steroids to give me a break once in awhile. I

don't think I should have to be in pain everyday if there is a fix out there.

Sorry I'm in pain and upset that I have to feel this way. I know this pain might

be mild compared to some of you but I can only take so much at times. You can

call it having a breakdown day. Lol.

> Thank you for letting me vent! Anyone with info about polymyalgia I would love

to hear it. Is there any type of treatment?

> Have a happy Thanksgiving everyone.

> Cheli

[Guest guest]

That's what I thought she was going to say but when I asked again she said

Polymyalgia. I know I do ache all over. Kind of feels like I have a permanent

flu bug. You know that achy feeling you get when you are sick? My muscles in my

lower back hurt everyday. My hips have been giving me pain in the past year. Not

sure why he wrote in the computer I have polymyalgia. So I have no clue

what is going on. Lol.

Cheli

Re: [ ] Does anyone have Polymyalgia?

Hi, Cheli.

" Myalgia " is muscle pain, and " polymyalgia " is pain in several muscle

or muscle groups.

There a disorder called " polymyalgia rheumatica, " but it would be

highly unusual for someone your age to have it.

Could the physican have said, " fibromyalgia " ?

Not an MD

[Guest guest]

Cheli,

That is downright criminal of your general doctor not treating your

JRA. Maybe if it had been treated then, it wouldn't be so bad now. He

should at least have referred you back to that rheumatologist. That is

really terrible that you now have polymyalgia on top of everything else.

I hope you can get some relief soon. I feel lucky that I didn't get RA

until I was past 60.

Sue

On Nov 25, 2009, at 4:11 PM, hlhsinfo@... wrote:

> The tests came back as having RA. I also had onset systemic JRA aka

> JIA aka STILL's is what they call it now. I have always had pain

> since I was a kid. I'm lucky, so far my joints are ok. I do have a

> bad back and a bad knee. I have all my blood tests and records from

> when I was younger. The Dr that have me my diagnose when I was

> little still works. My mom never followed up with her after the

> visit so they never treated me for my JRA they normally do. My

> general Dr back then thought he knew what he was doing but he

> didn't. He never took care of the JRA. I was in pain and so sick

> when I was little. When I got older I had a talk with my mom and

> showed her the file. She had no clue I was so sick. My liver was so

> shot I'm shocked I wasn't sicker. My liver is fine now. My splen was

> also enlarged back then. I do believe I do have RA. I wish I could

> say I didn't. I have been on Plaquenil for a little over a month

> now. I'm still trying to wrap my head over all of this. I'm in the

> why me stage. I have had it very hard the last 4 years. I'm just

> waiting for a break. I try to stay positive but I have my days.

> Cheli

[Guest guest]

I wasn't happy when I found out what had happened when I was little. On the

notes the rheumatologist said they wanted me to come back and start on a med

that started with a S. I don't remember without looking at the papers. I also

wondered how I would be today if I had help. Thanks for listening.

Cheli.

Re: [ ] Does anyone have Polymyalgia?

Cheli,

That is downright criminal of your general doctor not treating your

JRA. Maybe if it had been treated then, it wouldn't be so bad now. He

should at least have referred you back to that rheumatologist. That is

really terrible that you now have polymyalgia on top of everything else.

I hope you can get some relief soon. I feel lucky that I didn't get RA

until I was past 60.

Sue

[Guest guest]

Cheli, you'll have to ask your rheumatologist to be sure, but it

sounds as if he was just recording the fact that you have muscle pain.

Not an MD

On Wed, Nov 25, 2009 at 3:29 PM, <hlhsinfo@...> wrote:

> That's what I thought she was going to say but when I asked again she said

Polymyalgia. I know I do ache all over. Kind of feels like I have a permanent

flu bug. You know that achy feeling you get when you are sick? My muscles in my

lower back hurt everyday. My hips have been giving me pain in the past year. Not

sure why he wrote in the computer I have polymyalgia. So I have no clue

what is going on. Lol.

> Cheli

[Guest guest]

This point may have been addressed, but just

in case:

" poly " is a derivative of latin, of which most

medical conditions are descibed. Basically

descripive of the part it is referring to, such

as poly-cystic, poly- hydro. ( many cysts,

much water). So a word like that can be used

without refernce to a specific disease

with a similiar title. Polycystic does not mean

that you have polycystic ovarian disease. You

could but the one by itself means that you have

many cysts. It's more a description of a symptom.

Another example could rheumatic pain does

not mean the you have RA. So, many " old

school " drs still use these types of words when

dx'ing pts, sometimes to our benefit, not to saddle

us with certain labels that one, may make Ins filing

more difficult, or two, describing you symptoms

which as you have described you symptom, that would be

accurate. Polymyalgia is many muscles, not

polymyalgia rheumatica, which is different.

Hope that helps, Cassy

> > That's what I thought she was going to say but when I asked again she said

Polymyalgia. I know I do ache all over. Kind of feels like I have a permanent

flu bug. You know that achy feeling you get when you are sick? My muscles in my

lower back hurt everyday. My hips have been giving me pain in the past year. Not

sure why he wrote in the computer I have polymyalgia. So I have no clue

what is going on. Lol.

> > Cheli

>

[Guest guest]

Cassy

Thank you for clearing this up for me. Well what I have is what I have. Lol. If

it is named or not I have this pain. Labels help from what I have learned but

with my back the labels are not helping when I talk to my Dr. This is just

another step into my journey of getting a doctor to understand how much pain I'm

in and to do something about it. Now that I have my RA doctor on my side with

the Arthritis I need to move forward to find someone to help with my back. Lol.

Thanks again,

Cheli

[ ] Re: Does anyone have Polymyalgia?

This point may have been addressed, but just

in case:

" poly " is a derivative of latin, of which most

medical conditions are descibed. Basically

descripive of the part it is referring to, such

as poly-cystic, poly- hydro. ( many cysts,

much water). So a word like that can be used

without refernce to a specific disease

with a similiar title. Polycystic does not mean

that you have polycystic ovarian disease. You

could but the one by itself means that you have

many cysts. It's more a description of a symptom.

Another example could rheumatic pain does

not mean the you have RA. So, many " old

school " drs still use these types of words when

dx'ing pts, sometimes to our benefit, not to saddle

us with certain labels that one, may make Ins filing

more difficult, or two, describing you symptoms

which as you have described you symptom, that would be

accurate. Polymyalgia is many muscles, not

polymyalgia rheumatica, which is different.

Hope that helps, Cassy