Re: Re: I am back

[Guest guest]

Re: Re: I am back

<<<<(snip)>>>>

I have one other question. Do myositis patients experience more pain when their muscles have been exerted? I find that I don't have much pain until I try to use my muscles for some task. For instance I skimmed the pool the other night and thought my arms were going to break in two afterwards. They also go very weak afterwards. I could barely hold them up to brush my teeth.

Gentle hugs,

Fern

Fern,

My arms and legs used to really burn if I over did activities. I remember about a year and a half ago my husband and I were raking our yard full of leaves. I thought that I was not over-working myself. Later that night my arms burned like crazy! I couldn't sleep at all, they sure did hurt. ........but, this past Fall I raked those leaves again and my arms didn't go through the burning routine.

take care,

Connie

[Guest guest]

Hi Fern,

That is great that your doctor is so helpful. I know that you said that you didn't want to try the Minocin right now, but there is a lot of printable info on the rheumatic.org and roadback.org websites that your doctor might be interested in. It truly is a way to attack these diseases, and not just mask them with some of the other medications.

My doctor is always open to my bringing in information, even that off of the internet. So many doctors really get annoyed when patients bring in info.....your doctor sounds like a real gem!

Before you go the prednisone route you might want to get ahold of the book that I mentioned. I hate to sound like a broken record, but it would be of great value to you.

Oh yeah, sometimes my doctor checks my Aldolase level. You might add that one to your list.

take care and hugs to you,

Connie

(I'll stop nagging you now :-)

Re: Re: I am back

I have bad news and good news. I have continued to have trouble breathing and my muscles are very weak. I could barely turn over on the massage table today. I am so tired and I have so much to do. We are getting ready to go to New Hampshire for two months. I am really looking forward to the trip, but am worried about how I will handle it.

The good news is that I talked with my family physician today on the telephone. I told him about the difficulty breathing and the muscle weakness. He says that he is convinced that I have an autoimmune disorder. He knows what myositis is but he doesn't know a great deal about it. But he is the kind of doctor that wants to learn and wants to help. He said for me to bring him information from the internet and from this group and we will review it together and decide what to do next. He is planning to check an ANA, CPK, sed rate, and Anti Jo-1 antibody tomorrow. He said he wasn't familiar with anti-Jo but he is willing to do the test just the same. He also wants to try me on prednisone for a short course to see if it improves my symptoms.

Do you guys have any other suggestions for tests or anything else I should tell him tomorrow. He also said that he would refer me back to my neurologist or to one of the doctors that you told me about.

Thanks,

Fern

[Guest guest]

Fern

They started me on 60mg predisone.....I also

have heard others who started on 40mg....

in my case I had improvement with 2 -3

weeks .......when I started taking it I could

not stand up by myself.......dress myself

etc......and when I sat down where I landed

was where I stayed unless someone moved

me around.........sounds like you have a good

GP........for pity sakes DON'T go back to the

neuro if he's the one who blew you off.....

gotta be someone better.......try the ones

Vicki found

Teddi 0 dm

[Guest guest]

Fern, the percentage of myositis patients that have muscle after some

form of exercise is small but I also have pain. Like yourself, if I go

out for a walk my muscles in my legs really hurt and jerk after I come

back inside. While I'm suppose to do some exercise it sure makes it

difficult when you hurt so much afterwards. One Celebrex and I feel

soooo much better.

Vicki-PM

[Guest guest]

Vicki,

I am between a rock and a hard place when it comes to exercise. I cannot tolerate it at all because it sends me into flares every single time. The doctor says it is because I have both fibro and chronic fatigue. Chronic fatigue patients do not do well with exercise or exertion of any kind. I cannot tolerate Celebrex or Vioxx. I had a horrible reaction and the doctor said not to take them again.

I am so happy that you are feeling better. I hope that I will at least get some answers soon so we will know what road to take next. I think I will get as much testing done here before we leave for our trip and follow-up when I get back home. Hopefully I won't need care in N.H., but I will take a letter from my doctor explaining my situation just to be on the safe side.

Gentle hugs,

Fern

[Guest guest]

This neuro was very calm, compassionate, and a good listener; but when she heard me say fibro that was the end of her running my symptoms through her brain to see if she could come up with a diagnosis. "This patient has fibro and this must all be related. No need to do further tests except to humor her." I am sure this is what she was thinking by the look on her face and by the way the rest of the visit went.

I want to see a Board Certified Rheumatologist with experience in DM/PM or a Board Certified Muscular Dystrophy Doctor. I also want to see a dermatologist for all these skin lesions that I have been getting. She might be able to shed some light on this whole situation.

Gentle hugs,

Fern

[Guest guest]

Dear Fern,

I am so sorry you are having such a tough time. I haven't been on the

list for a few days. My name is Ann-Marie and I was diagnsoed with Mixed

Connective tissue Disease (MCTD) and PM in 1994. Besides the blood work you

mentioned, an EMG might be very helpful. I've read all of your posts but I

can't remember if you said you'd once had one or not. If you have, another

wouldn't hurt. You are in my thoughts and prayers. Take care of yourself.

We are rooting for you. I am so glad your family physician is so open.

Ann-Marie (MCTD/PM)

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Dear Anne-Marie,

I had an EMG after my shoulder injury in 1993 when my arm pain did not resolve. It only showed hyperactive muscles and nerves. I wonder why? They didn't seem to have an explanation, but now I am sure it is related to the fibro. It was a very painful test and I would submit to a muscle biopsy before I would put myself through another EMG.

I saw my doctor today. I had a fever of 99.5 with tylenol in my system so for once he got to witness the fever. He ordered a chest x-ray, aldolase, CPK, sed rate, Anti-Jo 1, Anti-PM-1, and an ANA. Hopefully this will confirm the diagnosis of myositis, but he says after reviewing the diagnostic criteria that I must have it. He wants to get it confirmed and then send me on to a rheumatologist because they all seem to want to fit me into this fibro box and cannot seem to consider that something else might be wrong with me. Maybe fibro wasn't the right diagnosis or maybe I have two diagnoses. We choose a rheumatologist who also specializes is in allergies (which I have many) and an immunologist.

In the meantime, he started me on a low dose prednisone. He is allowing me to play with the dose to see what works best for me. He says that it is definitely more than fibro because fibro patients do not have the inflammation or the muscle weakness that I have.

Gentle hugs,

Fern

[Guest guest]

Hi Fern, happy to hear that your on the right track now. Your one step

closer to the muscle biopsy.

I've had two EMG's .... the first one was done in the hospital and I

don't remember it hurting at all. I had the second one done about 8

months later.... and WOW... it hurt soooo much that it made me come

right off the table. I agree, the muscle biopsy was a piece of cake

compared to the EMG.

Hope you all had a great day... it's hotter than heck out my way...I'm

hoping for rain but won't hold my breath..

Vicki-PM

[Guest guest]

Dear Fern,

With my MCTD and PM I also have fibromyalgia which was diagnosed three

years later. I don't remember my EMGs (I've had two--and know that both

were pretty abnormal)--must have spaced out or something. I hope all

clarifies soon for you. I am keeping you in my thoughts and prayers.

Ann-Marie---MCTD/PM

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Fern,

It sounds like you have a wonderful family doctor. Our

family doctor was also very open minded and didn't

stop until we had an answer. She was very quick to

let us know when we were out of her league and to call

on specialists for what test should be run. 's

initial Dx was wrong and a devestating one, but it led

to the correct one. I would have to say that yes,

did suffer more pain after exerting himself. He

still tires out easily and is today laying around like

a wet rag. His 8 year old cousin is visiting with us

and is determined to keep up with him. My

youngest daughter turned 7 yesterday so we are all

dragging today after her slumber party! The last one

fell asleep at 2:00 AM. Crazy kids!

has an appt. with his rhumy tomorrow. I am

hoping we can drop the prendisone some more. Everyone

keep your fingers crossed.

Pam, sorry to read that your physical therapy is

causing you such pain. I don't remember being

in pain, just frustrated because they would put toys

out of his reach to encourage him to try and get to

them. My mom and I would stand off to the side and

silently cheer him on and cry. I hope things are

going better for you.

We are having beautiful weather in GA. Hope everyone

is experiencing the same!

Talk to you all later,

Cari and - JDMS

--- JHACHE wrote:

> Re: Re: I am back

>

>

> <<<<(snip)>>>>

> I have one other question. Do myositis patients

> experience more pain when their muscles have been

> exerted? I find that I don't have much pain until I

> try to use my muscles for some task. For instance I

> skimmed the pool the other night and thought my arms

> were going to break in two afterwards. They also go

> very weak afterwards. I could barely hold them up

> to brush my teeth.

>

> Gentle hugs,

> Fern

>

>

>

> Fern,

> My arms and legs used to really burn if I over did

> activities. I remember about a year and a half ago

> my husband and I were raking our yard full of

> leaves. I thought that I was not over-working

> myself. Later that night my arms burned like crazy!

> I couldn't sleep at all, they sure did hurt.

> ........but, this past Fall I raked those leaves

> again and my arms didn't go through the burning

> routine.

>

> take care,

>

> Connie

>

__________________________________________________

[Guest guest]

I tire very easily. Today I took my second dose of prednisone and had a good morning. My cleaning lady was here and I was walking around putting things away and doing some laundry, but tonight I am so tired I can barely hold my arms up and I am having great difficulty breathing again. I think the prednisone is going to help, but I have to remember not to overdo. I definitely did too much today.

Yes, I am very blessed in the doctor department and the attorney department as well. I have a good family doctor and a good fibro specialist.

Gentle hugs,

Fern

[Guest guest]

Hi Fern, very happy to hear your doing a little bit better. What mg of

Prednisone are you currently on and are you taking anything for your

breathing problems?

I over do it all the time. Drives me nuts that I can't do everything

all in one day. I hope all you gals with breathing problems get on the

right track as soon as possible. Take it easy.... better yet, go make

yourself a great snack.... you deserve it.

Vicki-PM

[Guest guest]

Vicki,

Thanks so much for everything you do for us!!!

Unfortunately I am not doing better. I am having horrible spells of not being able to breath properly. It is so tiring. I am taking 10 mg of prednisone every morning, but I think I need a second dose or a higher morning dose. I have got to get some relief or I am going to end up in the ER. The doctor says the breathing is definitely a result of weak accessory muscles that are used to help me breath. He is thinking that if he can get the inflammation down, the strength will start to return.

I am worried because I feel ill enough to consider a hospital stay and I don't want to ruin our summer plans. And I am just too tired to figure it all out right now.

Gentle hugs,

Fern

[Guest guest]

Fern,

I hate to hear this. Maybe you really should go on a higher dose of Prednisone to really calm down that inflammation. When I first began the Prednisone and my CK was at 18,000 I was told to take 20 mg in the morning and 20 in the evening for a month and then after that 40 mg all at one time. My CK dropped to 1,800 in 5 months. So maybe you need to hit it hard at first to get it under control and get you some relief. Ask your doctor what he thinks of upping your Prednisone dose.

And I will chime in with you, Thank you Vicki for all that you do for us!!!! I don't know what I'd do without you myself!!!! Thank you so much!

Please keep us posted Fern, I am really worried about you.

warm hugs,

karen

Re: Re: I am back

Vicki,

Thanks so much for everything you do for us!!!

Unfortunately I am not doing better. I am having horrible spells of not being able to breath properly. It is so tiring. I am taking 10 mg of prednisone every morning, but I think I need a second dose or a higher morning dose. I have got to get some relief or I am going to end up in the ER. The doctor says the breathing is definitely a result of weak accessory muscles that are used to help me breath. He is thinking that if he can get the inflammation down, the strength will start to return.

I am worried because I feel ill enough to consider a hospital stay and I don't want to ruin our summer plans. And I am just too tired to figure it all out right now.

Gentle hugs,

Fern

[Guest guest]

,

I am worried about myself and I don't often have this feeling of dread. I always have hope that tomorrow will be a better day, but right now I am having a hard time with that attitude. I can feel the strength just drained out of my body. I don't want to be worse and I don't want to struggle with illness constantly. Every stinking time I think I have adapted to my condition, something else comes up and makes it necessary to readjust all over again. I am just tired of fighting. I am not depressed in the sense that I feel there is hope, it is just that I am so damned impatient. I want to be better yesterday~!!

Gentle hugs,

Fern

[Guest guest]

Hi Fern, I'm so sorry your not getting better. I know the feeling your

having of not being able to breath. Your doctor should up your

Prednisone to a higher level until the inflammation comes down. I was

put on 60 mg when I got out of the hospital then we tapered it down.

Try taking 20mg or 30mg and see if that helps. The disease is in your

chest area and your lungs are working all by themselves without the help

of the muscles. You can't go on like this. If it continues you should

go to the ER. I'll tell you that the Prednisone will help you breath

easier. But it has to be at a higher dosage than what your currently

receiving. My doctor would let me judge whether I needed a higher

dosage or not. If my breathing became worse I would up my prednisone

until it got better. I would always call him and let him know what I

was doing and the reason for it.

Fern, please try it...you can even take another 10mg tonight if you

think it would be alright with your doctor. You are wearing yourself

out trying to breath. Do you also experience heart palpitations?

Keep us informed as to how your feeling but I really recommend taking a

trip to the ER before you get too exhausted.

Warm Gently Hugs to you,

Vicki-PM

[Guest guest]

Fern, it is very hard to deal with this disease day in and day out. Not

be able to breath is taking a tole on you. Are you able to get a full

nights sleep? And I don't mean just cat naps... I mean deep sleep.

This is what I would do tonight....I would take another 10 mg of

Prednisone and call your doctor in the morning to let him know what you

did. was right, you need a much larger dose to hit it hard then

you can tapper down.

I hope and pray you can get some good sleep tonight.

Hugs

Vicki-PM

[Guest guest]

Hi Fern,

With this darn myositis, just when you feel all is well, they find something else, or you go into a major flare. It seems to be a roller coaster ride, but hang on tight and please don't let it get you down. I believe the power of the mind can help to heal our bodies too...so please try to stay positive...I know, easier said than done. And please, don't suffer with the pain...no doctor wants you suffering from pain. Up your Prednisone and lay down and relax as much as possible.

When I saw Dr. Wortmann, he told me I need to sleep 10-12 hours at night and take a 2 hour nap during the day...resting is key with myositis.

I understand what you mean about wanting to be well yesterday. After being told I'd be in remission in a year and here it is 5 years and 5 months later, I am about tired of the fight myself, but that's all I have to be able to see the light at the end of the tunnel...and I will reach it. =

Please do get on a larger dose of Prednisone...hit it hard at first, kay.

warm hugs,

karen

dm

..

[Guest guest]

Hi Fern....well has said it all and how true it is. This is a

roller coaster ride that seems to have no end but you must keep up your

spirits. I know, easier said then done.

The sleeping 10 to 12 hrs with a nap was also told to me by my doctor as

well. He told me the night time sleep was very important since that's

when your muscles store up energy. In order for this to happen you need

to go into a deep sleep. One of the pit falls of Myositis is that it

won't allow you to go into a deep sleep most of the time. Very common

problem. That is why most doctors have to prescribe a sleeping aid. It

makes all the difference in the world.

I am so concerned about your breathing...I'm hoping you contacted your

doctor this morning... with your breathing the way it is, your not

sleeping good at night I'm sure, also adding to the problem. Please let

us know how your doing today and keep your chin up kiddo. I wish I was

there to help you get through this...

Hoping for a better day for you..

Hugs

Vicki-PM