Re-post: Lots of questions - please help

[Guest guest]

Hi all,

I sent this post yesterday. I know I am asking a lot of questions.

But if any of you can answer just one or two, I would so appreciate

it. I cannot change rheumatologists yet because I need a referral.

I also live in a small town where there are only a couple to go to.

I am not looking for anyone to diagnose me. I am just trying to

figure some stuff out and need your help, please.

I have some specific questions. Until recently, I did not have pain

all of the time, it would come and go. As of a few weeks ago, it is

constant—mainly in my neck, shoulders blades, upper arm, lower back,

behind my ears, and ear ringing. The worst is my right side, that is

also where I have TMJ in my jaw. But, again, the TMJ only happens

when the pain is there.

Is it normal (whatever normal is , to have flare ups?

I also have redness on my neck on both sides-looks like a patch about

1/2 inch high and about 2 " long-where it is painful. If I push on

them at all, my neck and ears. Does anyone else get this?

When I flare up like this, the Tinnitus gets 5000 times worse and I

also get a little puffy in my face. Does anyone else get this?

Also, when the pain is real bad and the Tinnitus and TMJ are real

bad, I get redness on my neck – live a V you would get from getting

sun burn from the exposed area of a shirt. Does anyone else get this?

I have little lumps on my collar bone-one on each side. If I push on

them at all-even a little, it is painful in my ear and shoulder. The

right side again is worse. Does anyone else get this?

I can be in bed at night sleeping and my knees start to ache

horribly. Same for both legs. It cannot be my arthritis, osteo or

RA, because the left knee is a knee replacement—yet the pain is the

same. Does anyone else get this?

All of this started in 1999 when I was very sick with a cold, cough,

flu. Prior to that time, none of these things occurred.

I am asking all of these questions because I am so frustrated. When

my Rheumatologist's PA gave me a prescription for Lyrica yesterday, I

asked her flat out if I could have Fibromyalgia. I told her the pain

is very different from RA pain and osteo pain. She said " we do not

like to talk about it because the patient then thinks they have it… "

I said, wait a minute, I am the one who brought it up to you. She

then proceeded to say again they do not like to talk about it. Does

this happen to others? I am not a faker. I know that a diagnosis

may not be necessary for some, but I have had this type of pain for

9+ years and no one listens to me.

Thanks for all your help,

[Guest guest]

, sorry I have been off for a bit. I usually am able to post or

look about every other day. I'm afraid I can't answer most of your

questions. I just don't have some of your issues but I did want you to

know someone was looking and reading. As far as flares, yes, it is

fairly " normal " to have flares. They vary for all of us though. Sorry

to hear about your doctor. Some are just that way. It's not something

one can control, though we all would like to just throttle them. I too

live in a small town and can understand the lack of choice one has in

doctors. I have to go 2 hours to see mine but he's worth it. I think

most all of us in the group have at one time or another come across

that group of doctors/people/friends ect that just won't believe in

this illness. Well, I know I wasn't much help but just wanted you to

know someone was " listening. "

Fibro(((Hugs)))

Tammi

[Guest guest]

Well, I just joined the group for answers to many of the same questions that you

have. I get red faced a lot for reasons that I cannot seem to figure out just

yet. I feel like I am loosing some hearing in one of my ears, and my ears have

been ringing for some time now, but I am not sure what the abreviations are that

you mentioned. I have restless leg syndrom, and a couple years back I saw an ad

on TV and brought it up to my doc, after complaining about it for years, and

she said that we could give the Requip pills a try, they worked wonderfully, but

then I had stomach complications and I had to stop using the pills. I am back

to the restless legs at night. I take some herbal remidies for sleep now if I

need to. All of my joints hurt sometimes, sometimes joints and muscles

together, often to the point that I just cry, tears just flow down my face

without me even trying to cry. Then I just wipe my face, get up and get more

chores done because I have to! My back, just around my right shoulderblade

hurts all the time, sometimes very bad, sometimes just an annoyance. The same

with the muscles around my rear end, side and back. I have hurt so bad in the

past that I can feel my blood pressure going up, I feel like I will have a heart

attack at any moment, dizzy, out of breath, and all the rest of what I just

cannot bear to put into words for fear of being locked up!!!!! When I go to the

doc or even to the ER they tell me that nothing is wrong, it is just anxiety!

Well I would like to know what I am being anxious about, other than unbearable

pain! I don't have too much in the way of stress in my life right now, kids are

grown and gone and the bills are paid, the hubby is getting well after a few

years of bad surgeries, and it is spring time in Alaska!!! So what can be done

about the pain???? Well, the docs just do not want to talk about it! At least

your doc told you that she/he did not want to mention it, my doc did not say

anything, just changed the topic completely without addressing the question of

Fibromyalgia!

Don't know how much I helped, but just know, as I have started to learn, we are

not alone, you are not crazy!

Love and gentle hugs,

Connie

[Guest guest]

Hi Tammi,

Well, I know I wasn't much help but just wanted you to

know someone was " listening. " >

No, you were a great deal of help and support. I appreciate it very

much,

[Guest guest]

Hi Connie,

It sure sounds like we have a number of the same issues. Do you mean

the abbreviation in my post of TMJ? I do not know the exact wording,

but it is when your jawbone clicks when you open and close your mouth.

I have it bad in my right side. In fact, my right side is my worst side

for everything.

I really can relate to how you feel about being treated so ridiculous by

doctors and the ER. There is such a stigma regarding this disease. I

just never realized how widespread.

Thanks for responding. I guess we need to learn and get by together.

[Guest guest]

Some of the things described do ring true for me. The TMJ thing can also be

abcessed teeth. It was in my case a couple of times. The pressure points are

common, the back and leg pain goes with what I have. But I have Lupus, Fibro

and Myofascial pain so its really hard to pinpoint what causes which. I started

out with the Lupus diagnosis and as I kept pointing out additional pain issues

the fibro and myo were subsequently diagnosed. I had wondered in the back of my

head but I never mentioned them to the doctor.

I recommend you get the Fibro book written by Dr. Wallace. It is a much

easier read than many books on the subject and it is pretty thorough about what

can happen, etc... even medications. I keep both his Lupus book and the Fibro

book as ready reference whenever something new appears.

Angie Harley Mama Double-D

Carson City, NV; Single, five children (3 at home), 2 dogs, 4 cats, snow skiing,

camping, Harley Rider, Lone Wolf, Blue Thong Society/High Sierra Thong Snappers

member, LFA Advocate, independent, opinionated, outspoken, and open minded.

" It's always something. " ~~~Gilda Radner

" While we have the gift of life, it seems to me the only tragedy is to allow

part of us to die - whether it is our spirit,our creativity, or our glorious

uniqueness. " ~~~Gilda Radner

http://www.mybloglog.com/buzz/members/AGBlog/

http://360.yahoo.com/lovinglifeinnv

http://www.myspace.com/amkg

http://doripost.agrato.info/

http://wine-and-chocolate.blogspot.com/

http://weblog.xanga.com/purplepassionate

http://www.revolutionhealth.com/blogs/angiemg

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http://health.groups.yahoo.com/group/LupusSurvivorsU/

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