Re: Re: Pain with the new gal....

[Guest guest]

Hi Jax.... When I got diagnosed I hit the internet and started to read

everything I could about PM... I was very surprised that most websites

talked about little to no pain with PM... HA! I asked my doctor why and

he said at first they did think there was no pain associated with PM but

now have changed there minds. Also, it was thought that the pain would

go away when the CPK and SED rate fell in the normal range... they now

know that's not true either. There are many PM patients that don't

have pain but there are many who do. Doctors need to know this and not

must pass it off as something else.

Researchers are finding out more and more about this disease each

day...it takes the doctors to find out what is going on in our Myositis

world...This means they have to read...and some doctors are not willing

to do the research. It takes a dedicated doctor that loves to find the

reason why...

Take care,

Vicki-pm

[Guest guest]

PAIN! uh, huh, I could be the poster girl for suffering in silence! My best

guess is that patients are so frightened by the muscle weakness that its

first in their mind when they talk to their doctor. Either that, or we get

conditioned to the pain and don't complain loudly and often enough, i.e.the

doctors don't perceive pain as a primary complaint. But it's there! Oh, boy

is it there!

My hubby had an interesting talk with someone from the myositis foundation,

and that person recommended sending me straight to the MDA clinic. Don't

know if anybody has tried MDA, but their website has a lot of info about

myositis.

Re: Pain with the new gal....

> Hi,...I've been reading quite a few articles about PM, and several

> said that pain wasn't one of the main complaints. Is that true for all

> of you? I wonder if you tell a Dr. that you have severe pain he would

> overlook the dx of myositis because the literature doesn't list it as a

> high priority. My body has high pain most of the time. Even at rest I

> can't seem to get any relief, and I can't take enough pain meds to get

> rid of it all together. I haven't been dx'ed yet. Still trying to find a

> Dr. When I've called a couple Rheumatologists, and our local Arthritis

> Chapter I've asked if they can recommend a Dr. who has researched or

> experience with Myositis. They keep telling me that ALL their

> Rheumatologist would know about PM, because that's in their area of

> studies. The one Dr. that was recommended to me had closed her door to

> non-dx'ed patients. They said she was too busy with clinical research to

> see patients that didn't already have a confirmed DX.

> The Arthritis Assoc. is sending me a list of Rhuemy's in my area. So, I

> guess on Monday I'll be calling to see who is more familiar with PM.

> My gosh Helen,...you will be in my prayers. 76 lbs is alot to lose.

> Has this been just while you were in the hosp. and Who sends a patient

> home with PNEUMONIA?? I'll be thinking about you, and if you are up to

> it let us know how you are doing. {{{{{hugs}}}}

> ,....what are some Dr.'s thinking? or lack there of,.....hard

> exercize for FM will definately put you into a full blown exaserbation!!

> You were smart to run away fast from that jerk dr. I had one tell me I

> should get up at 5 am every morning and go jogging and I would feel

> better in no time! Geesh,......I told him if I didn't get enough rest at

> night and got up too early I get nauseated. What do they think, we MAKE

> UP these excuses?? I think all Dr.'s need to go thru their board tests

> again every few years to be able to continuing practicing. AND......take

> a course in HUMAN SUFFERRING......too many of them are so callous, it

> does make you Dr. phobic. I've had some real doozies of Dr.'s, that

> treated me so bad I cried. Just recently when I was looking for a PCP I

> had a Dr. turn me away because I had too many problems physically for

> him. I've also been prejudized against because I am fat, and they can't

> get past the weight and tell me to lose it and I wouldn't be sick.

> Thanks to Anne Marie and for the WELCOME.

> I don't think my lumps are calcifications. I've seen pictures

> of Calcinosis and it looks like eventually they break thru the service

> and ooze white chalky stuff. Not a pretty picture. I think they could be

> lymphomas attached to the muscles, or something associated to an

> accumulation of fibers. Maybe scar tissue from hurt muscles? Just

> guessing, and trying to rack my brain to why they are there.

> Cari I hope your knee feels better real soon,.....

> Smiles and hugs to all,.....Jax [who just turned 50 years young in July]

>

>

>

>

>

[Guest guest]

Hi ... never had to go see the MDA because I already had doctors

who knew about myositis... rare I know. lol

But, if you can't find a doctor in your area then by all means call the

MDA and ask for an appt. I had also heard that if you haven't been

diagnosed yet... they will pay for all the testing. Sounds pretty nice

to me.

Take care,

Vicki

[Guest guest]

Jackie,

Funny story about a medical school instructor that made all of students

undress and get up on the female examining table and put their feet in the

stirrups. They had to all be examined that way in order to get pass the

course they were in. The doctor who told me this story said it made all the

difference in the world to him after that how his patients felt and what he

was doing to them.

Gentle hugs,

Fern

[Guest guest]

Fern, what a great story with such a wonderful ending. ALL doctors

should have to go through what there patients go through. I'm sure our

medical world would soon change. I've now learned that if a doctor is

short with me ... I ask why. It really throws them off guard and

they'll know the next time I won't put up with it. If these individual

got into the medical field because they want to heal people.. then there

whole attitute only makes the patient feel worse...

What Jackie said about her weight and the doctors reasoning was

horrible. I had gone through somewhat the same thing. My doctor (the

one I got rid of) kept telling me if I lost weight and watched what I

ate I would feel better...he also said that he was tired of telling me

to loose weight and I just didn't want to listen.

Once I changed doctors and went to the hospital I lost some 51lbs in 11

days.

Vicki-pm

[Guest guest]

was in a lot of pain with his JDMS. He would

moan and groan in his sleep.

Cari

--- anzavic@... wrote:

>

> Hi Jax.... When I got diagnosed I hit the internet

> and started to read

> everything I could about PM... I was very surprised

> that most websites

> talked about little to no pain with PM... HA! I

> asked my doctor why and

> he said at first they did think there was no pain

> associated with PM but

> now have changed there minds. Also, it was thought

> that the pain would

> go away when the CPK and SED rate fell in the normal

> range... they now

> know that's not true either. There are many PM

> patients that don't

> have pain but there are many who do. Doctors need

> to know this and not

> must pass it off as something else.

>

> Researchers are finding out more and more about this

> disease each

> day...it takes the doctors to find out what is going

> on in our Myositis

> world...This means they have to read...and some

> doctors are not willing

> to do the research. It takes a dedicated doctor

> that loves to find the

> reason why...

>

> Take care,

> Vicki-pm

>

>

__________________________________________________

[Guest guest]

Hi Cari,....then why do you suppose some of the lit. about myositis says

that pain isn't a major complaint? I feel so bad for . I haven't seen

where you've told how he is doing now? How old is he?

Smiles, Jax

Cari Dorsey

wrote:-------------------------------------------------------------->

>

> was in a lot of pain with his JDMS. He would

> moan and groan in his sleep.

> Cari

[Guest guest]

Jax, is 4 1/2 years old. He was intially

diagnosed with Duchenne's Muscular Dystophy at the age

of 2 years, 11 months. Duchenne's has a life

expectancy of about 16 years. We were devestated.

They did a muscle biopsy 3 weeks later and then

changed the Dx to Juvenile Dermatomyositis (JDMS) For

us, the JDMS dx is a gift. Something we can fight,

and even win. We were told with the first Dx, that MD

was not painful, yet was definitely

uncomfortable and I would say, even in pain, at times.

At this time, is in " clinical remission " . He

has 100% use of his muscles. He is still on 5 mg

prendisone and 100 mg. Plaquinil every other day. He

is sensitive to the sun, and hot and cold weather

still seem to affect his muscles. He tires more

easily then his friends and we are still trying to be

Bowel Movement trained. His face still gets bright

red, then pale and even stripped, or spotted at times.

He keeps a lacey purple rash on his jawline. We are

grateful every moment of every day for how well he is

doing. Yesterday he piled up all the dirty laundry

that I had sorted into piles, into one big pile. He

said, " Mom, watch this! " He stood on the back of an

overstuffed chair, jumped onto the seat cushions,

which sprung him onto the ottomon which launched him

into the pile of clothes. What fun! I wanted to try

it. Always a fine line between stopping him because

he could get hurt and being so thankful he can do it.

Take Care!

Cari and the flying - JDMS

--- Jackie Hanan wrote:

> Hi Cari,....then why do you suppose some of the lit.

> about myositis says

> that pain isn't a major complaint? I feel so bad

> for . I haven't seen

> where you've told how he is doing now? How old is

> he?

> Smiles, Jax

>

> Cari Dorsey

>

wrote:-------------------------------------------------------------->

>

> >

> > was in a lot of pain with his JDMS. He

> would

> > moan and groan in his sleep.

> > Cari

>

>

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