Re: symptoms question

[Guest guest]

Clora, supposedly Polymyalgia Rheumatica affects the muscles, not the joints. I

know when it hit me I thought I had a bone disease because all the muscles in my

arms and legs hurt so bad I couldnt move. a

[ ] Re: symptoms question

Group;

I looked up polymyalgia and it sounds like rheumatoid arthiritis. Does

anyone know the difference? I hurt in all the places it stated for

poly. But I was diagnosed with RA. I alsso have fibro. It sounds

very painful like RA. If anyone can tell me the difference in

polymyalgia and rheumaatiod arathrits, please send a post.

gently hugs everyone

Clora

[Guest guest]

, that is what happened to me. First my doc said Polymyalgia (I

literally couldnt lift the covers off, it hurt so bad), then he said I had RA

too because my hands and fingers became swollen, now because my blood work is

(and basically always has been) normal he is totally stumped. Its hard to fight

when you dont really know what youre fighting. a

Re: [ ] symptoms question

I have Polymyagia Rheumtica (PMR). My rheumy ran tons of tests to

rule about just about everything else before giving me that diagnosis,

although he has recently said he thinks it is/has morphing/ed into

" unspecified auto-immune inflammatory disorder " , which I think means

he really doesn't know what to call it! Originally, my RA factor was

negative, my ANA was low, but my SED rate was about 95. A short

course of high dose prednisone felt like a miracle, I was so much

better. That's one of the markers for the dx, prednisone helps

immediately.

It started with a sore neck, I thought from sleeping wrong. It

gradually got worse, until my whole body was stiff and sore, and

moving hurt. My right shoulder was the worst, I couldn't move my arm

above my waist. it was eventually dx'ed as frozen shoulder, and among

other things, I went through a course of physical therapy for it.

Eventually, the left shoulder too. I've been told frozen should is

very common with PMR.

This is where I get a bit confused, I don't understand exactly how PMR

works. I know PMR is an auto-immune disorder. It does not attack the

joints the same way RA does, it doesn't do any permanent damage by

itself, but that doesn't mean it's harmless. It is extremely painful.

Besides the aching joints, my muscles screamed most of the time

before we got it under control. It was like every major muscle in my

body spasmed at once, and wouldn't let go. Not for a few minutes, or

a few hours. Not even for a few days, it was about 2 years before I

got any relief except for pain meds. I was on prednisone, but that

needed to be limited because as we all know, prednisone does cause

permanent damage. Even trying to keep the doses as low as possible

and still function on some level, I now have osteoporosis and

steroid-induced diabetes. Five years after my dx, I'm still on 5 mg

of prednisone a day, and have tried and had to stop methotrexate and

Humira. I also have permanent damage to my hip, back and thigh

muscles because the side effects of the Lipitor got masked by the PMR,

so I kept taking it way too long.

For a lot of people, PMR only lasts a year or two and then they go

into remission. But for a significant number, it is much more severe,

and just hangs on and on. Also, another condition called giant cell

arteritis (GCA) can be associated with PMR. GCA is an inflammation of

the arterties, usually the ones in the head, and untreated can cause

lose of vision pretty quickly.

Mayo Clinic has a couple of articles worth reading if you're

interested in either PMR or GCA:

http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441

http://www.mayoclinic.com/health/giant-cell-arteritis/DS00440

A long reply, but hope this helps answer some questions.

Gentle hugs,

On Sat, Aug 23, 2008 at 11:26 AM, Leanne <oldredmom@...> wrote:

> Hi!

>

> I am still trying to figure out this whole RA thing. My original

> diagnosis was Polymyalgia, but the latest doc disagrees with that. I

> am currently waiting to see a Rheumatologist...

>

> Here's my question. This morning I woke up to excruciating pain in my

> left shoulder and upper arm. The muscles are so sore, I can hardly

> use the arm at all. Is this typical of RA, or is it something else

> entirely? I have a lot of joint pain, but also a lot of muscle pain.

> I am in the process of weaning off of prednisone, so I'm thinking that

> might have something to do with it as well. I'm now at 7.5mg daily.

>

>

> Thanks for listening.

>

> Leanne

>

--

South Pasadena, CA / Lilydale, MN

You can see my galleries at http://www.pbase.com/arenared986

M. Schulz - " All you need is love. But a little chocolate now

and then doesn't hurt. "

[Guest guest]

Sue, my frozen shoulders were over a year apart. When the second one

started, I knew immediately what it was, and got a cortisone injection

right away and started PT. So, it turned out to be not nearly as bad.

Not both at once, I don't know how I would have handled that!

On Sat, Aug 23, 2008 at 9:00 PM, Sue <marysue@...> wrote:

> , I was at first misdiagnosed with two frozen shoulders, plus

> diabetic limited joint mobility syndrome in my hands. I was also sent

> to physical therapy, and it was agony for them to move my arms the way

> they did. It turned out that I had RA. And I'm thinking that most

> people who have frozen shoulder probably don't have it in both

> shoulders at once.

>

> Sue

>

--

South Pasadena, CA / Lilydale, MN

You can see my galleries at http://www.pbase.com/arenared986

M. Schulz - " All you need is love. But a little chocolate now

and then doesn't hurt. "

[Guest guest]

I think today has been my single worst day since this all started many

months ago. I have had so much pain, and slept through a lot of the

morning. All I want to do is sleep, and cry...

I can't take anti-inflammtories like Advil because I have an inherited

kidney disease. My daughter is offering me her Percocet! She had her

wisdom teeth out just over a week ago, and has some left. But, I

wouldn't do that...

Tonight I went to the arena to watch the try-outs for the team I

volunteer with. The cold in there was not feeling good at all. My

" good " knee started to ache. Not sure how I'm going to get through

this winter.

Leanne

[Guest guest]

Having two frozen shoulders at the same time was certainly not the most

fun I've ever had in my life, LOL. The methotrexate took care of them,

since they were caused by RA. But trying to do the PT exercises was

hard, especially when you were supposed to do so and so with your good

arm.

Sue

On Saturday, August 23, 2008, at 11:02 PM, Overell wrote:

> Sue, my frozen shoulders were over a year apart. When the second one

> started, I knew immediately what it was, and got a cortisone injection

> right away and started PT. So, it turned out to be not nearly as bad.

> Not both at once, I don't know how I would have handled that!

>

[Guest guest]

a;

Thanks, That sounds like fibromyalgia but I guess there is a blood

test to tell if one has polymyalgia where as fibro is a doctors

medical assesment.

gentle hugs

Clora

>

> Clora, supposedly Polymyalgia Rheumatica affects the muscles, not

the joints. I know when it hit me I thought I had a bone disease

because all the muscles in my arms and legs hurt so bad I couldnt

move. a

[Guest guest]

Leanne and Group;

Leanne sweetheart, I am so sorry you hurt so bad. I would sleep to

much and than I couldnt sleep at all. Many of us here know how bad

the pain can be. I am not condoning taking some one elses pain pills

and believe me I am very careful what meds I take. Before I had a

diagnoses I had to take what pain meds I could get. AS long as I

know I could take them and they was safe for me. I would take only

the recomended dosage.

You didnt say what meds you was prescribed or if you are diagnosed

with RA or Fibro. You need to find out if you can because you can

start a regement of medicine from your doctor. Since you have a

kidney disease I am sure you must be careful what you take. So yes

be careful you know what you can have and can't have.

It is very important that you get help for your pain. It is so

aweful to live in pain like that. We are here for ya and I pray

that you can get help for your pain. Are you crying from the pain,

or are you crying cause you have pain? You may also be depressed.

See a doctor to see if you're depressed. Depression meds will also

help you tolerate pain. God Bless you sweetheart. I Hope you find

out what is wrong and get this pain under control.

GEntle hugs everyone

Clora

> I think today has been my single worst day since this all started

many

> months ago. I have had so much pain, and slept through a lot of

the

> morning. All I want to do is sleep, and cry...

>

> I can't take anti-inflammtories like Advil because I have an

inherited

> kidney disease. My daughter is offering me her Percocet! She had

her

> wisdom teeth out just over a week ago, and has some left. But, I

> wouldn't do that...

>

> Tonight I went to the arena to watch the try-outs for the team I

> volunteer with. The cold in there was not feeling good at all. My

> " good " knee started to ache. Not sure how I'm going to get through

> this winter.

>

> Leanne

>

[Guest guest]

Hi Leanne - I have the same pain in my shoulders that you've

described. Part of my problem was bone spurs on the humeral head of

my right shoulder - surgery took care of that, but I still have

shoulder pain - just different now. It'll be interesting to hear what

your Rheumy has to say - to me it sounds like RA and Fibromyalgia,

but I'm not a medical person at all - its just you sound alot like me.

As far as the toilet goes, I also use the handicap stall in public,

but so far at home, I'm ok with the normal ones. Our bathrooms are

small, so I have the sink on one side and the tub on the other side

to hang onto if I need the extra help getting up or down.

Keep us posted on how you're doing and welcome to the

group....Doreen

>

> Hi!

>

> I am still trying to figure out this whole RA thing. My original

> diagnosis was Polymyalgia, but the latest doc disagrees with that.

> I am currently waiting to see a Rheumatologist...

>

> Here's my question. This morning I woke up to excruciating pain in

> my left shoulder and upper arm. The muscles are so sore, I can

hardly

> use the arm at all. Is this typical of RA, or is it something else

> entirely? I have a lot of joint pain, but also a lot of muscle

pain.

> I am in the process of weaning off of prednisone, so I'm thinking

that

> might have something to do with it as well. I'm now at 7.5mg daily.

>

> The other problem I had this morning was the toilet! It was way too

> far down to go, and too far to get up again. Does anyone use a seat

> extender or some such thing to reduce that distance? I always use

the

> wheelchair stalls in public washrooms - find them more

comfortable

>

> Thanks for listening.

>

> Leanne

>

[Guest guest]

Thank you so much for all the support!

Yesterday truly was a day from hell, but I'm feeling a lot better

today. Not nearly as much pain, and my mind is clear. What a

difference that makes!

Clora, you raised a very interesting question. Crying because of the

pain, or because of being in pain. There really is a difference,

isn't there? For me, probably some of both, including a bit of

self-pity thrown in.

I was originally diagnosed with polymyalgia last November, and put on

Prednisone. I had a Sed rate of 60 at the time. It has gone down to

34, but I'm not too sure what it is right now. In June another doc

put me on 200mg of Plaquenil, and wants me off the pred. Now I'm up

to 400 Plaquenil and down to 7.5 pred. What a roller coaster! I also

take several other meds...

The second doc told me the other day that I have " rheumatic disease "

which I'm assuming means rheumatiod arthritis. I go back to my family

doc this week to discuss things (along with me knee, but that's

another story!). I'm being referred to a rheumatologist, but who

knows how long that's going to take. He's in a city about an hour and

a half away, and obviously serves a large area. I had a whack of

blood tests, and I'm going to get the numbers from my doc this week.

Again, thanks for the support. Here's hoping I don't have another day

like yesterday, and neither does anyone else.

Leanne

[Guest guest]

Leanne and Group;

Hon when I started this group I was so touched bye the support from

everyone when I said how much pain I was in. I was shocked. No one

seem to care like our group does. My family and friends are in

denial or just dont understand. I was in so much pain all I could

do was use the bathroom and eat. People would tell me I need to

exercise or lose weight to stop hurting. I even believed it at

first.

Of course if one is overweight they need to lose it. And if one can

exercise go for it. I couldnt do either. Food seem to satisfy the

pain some lol. I heard things from the group like look for the

better days or take it one day at a time. When I read what meds

people was taking that helped, I knew my rheumy had to make some

changes. She did. I start humira the 28th. I know it might not help

but again it might. I am taking prednisone now. I am weaning off it.

I was depressed for a long time. I went to mental health and they

started me on depression meds. Effexxor, It really helped and the

amazing thing is it helped the pain also. Thats why I asked if you

was crying from depression also. If so you may need to take a

depression med. TAlk to your doctor they can prescribe it for you.

I hope you have many more good days . When it does get bad send me

a post I will be glad to chat with ya.

gentle hugs everyone

Clora