Re: caution: chelsea venting ahead

[Guest guest]

Chelsea wrote:

> Thanks for letting me vent. I am sorry I am so negative right now and I'm

sorry that i can't capitalize, it really hurts to use the shift key.

Chelsea,

I encourage you to keep a pain dairy so the doctor can see your pain levels, and

what works and does not work for you.

This way it is a format they can address. I hope you find a good doctor. I

would look for a doctor who specializes in fibromylgia

and you can research this on the internet. Good Luck. Bennie

[Guest guest]

Chelsea,

I have been going through the same thing. I do have Fibro, for 20 years, but I

have been having joint pain and swelling, mostly in wrists and hips. Every

Rheumy says its Fibro but I know Fibro and THIS is not Fibro! They have run the

gamut of test on me and nothing. They say it MIGHT be hyper-mobility but I don't

believe that either for a lot of reasons. 

Current Rheumy did try and get my Vit. D levels up, have you had those tested?

Helped a little bit. But then I cut out GLUTEN (I'm vegetarian so this was not

easy) and the joint pain has gone down some. I was eating too much of that

stuff. You might want to see if your allergic to that as well?

I finally just gave up on my Rheumy when I started getting calcium deposits in

my shoulders, wrist and he still has no idea why and acted like I was crazy for

even wanting to know WHY??? He told me that I was dumb to have total shoulder

reconstruction because it doesn't last a life time...well, I had NO CHOICE, my

shoulders were coming out of socket and forming cyst that were so painful and I

couldn't use my arms!! Come on...and to tell me I shouldn't have gotten it done

when its too late, was the last straw. Thanks for the support Doc...NOT! I know

I have some kind of weird form of arthritis (or something)and I just WISH they

would take the time to figure it out and not act like I'm just crazy!

PLEASE let us know how things progress and the appt. goes. I hope you get a

diagnosis and things start looking up. I will be thinking of you, I know the

feelings you are talking about and can so relate.

take care,

Caitlin

i have an appointment with a rheumatologist day after tomorrow.  this is to

retest me for r.a.  my fibromyalgia diagnosis is under serious doubt as the

joint pain in my hands, wrists, elbows, ankles and feet has increased

exponentially for the last 18 months or so.  i just don't have the muscle pain

or the traditional trigger points of fibro.  i do have the fatigue and flu-like

symptoms, though.  i have tested negative for r.a. in the past, but that was two

and a half years ago, so here we go again.  i am assuming that i will test

negative again.  the possibility of seronegative r.a. has become a hot topic

with the two internists i see.

[Guest guest]

Oh Chelsea,

I am so sorry for the scary time you are having. How well you put your feelings.

You have a way with words! I am sending you a good thought and a prayer and

really hope you encounter one of the compassionate doctors that are out there,

that will believe that you are in pain even though their tests don't come back

positive.

Personally I am interested because I am in a similar situation. I have all of

the symptoms of RA and my tests come back negative. Now that I am off of

prednisone my rheumatologist may try one of the basic RA drugs with me. I am

more than a little nervous about that. Let me know how things turn out.

I know things look dark now, but hang in there. Try to treat yourself like you

would a sick friend. You would assure them of their worth; you would get them

tea, plump their pillows and pat them on the head. I wish you loving kindness

and the knowledge that in you pain and suffering, you are deeply cared for.

J.

>Chelsea wrote:

> i have an appointment with a rheumatologist day after tomorrow. this is to

retest me for r.a. the possibility of seronegative r.a. has become a hot topic

with the two internists i see.

>

> i'm terrified of being dismissed and not believed AGAIN.

>

> along with all this comes the feeling of the futility of it all and the

feeling or personal worthlessness.