What the? (rheumy rant)

[Guest guest]

So I waited months to get in with a rheumy. For a new patient appt. And kept

calling for cancellations.

I tried three different rheumy's, to see who i could get in soonest with, via

cancellations. I cancelled two, once one appt won the race.

So I went in for this appt. She looked young and new. Extremely nice, and

gentle sounding. Couple yrs out of residency I would guess.

She looked at the records from 10 doctors I went to before her in the same

medical center--other specialists (ent, pulmos) and my internist. She listened

to me complain about my fatigue and soreness. (Soreness, I don't have pain.).

She said, " Like the other doctors said, you have fibromyalgia. " . Huh. I thought

they said I *probably* have fibro. I thought the rhemy's had the final word on

the matter. That's why I was here! She didn't take any more blood--only looked

at what the internist had done. She didn't do an exam. No orthostatic

intolerance test. No nothing. He said my symptoms won't go away--from what she

knows. (sounded like " from what she reads... " ). She gave me some info on two

clinical trials--which I am not interested in! She calmed me and said one isn't

for a new med, it's behavioral--which I could handle--but it was too far for me

to drive and get too regularly--she must have forgotten about my primary sleep

problems.

And that was that. Everything she told me I had already read on the Internet.

I was quite disappointed. It wasn't helpful, nor did she inspire confidence in

her or in me getting better. She just said get my sleep In order and I'll feel

better. Funny I've had severe sleep problems for 2 decades +, and haven't

managed to get it in order, and it's my sleep fell apart when the fibro and

fatigue hit. If I could get rid of the fibro and fatigue, I might be able to go

back to my old messed up sleep (the devil you know) and at least be functional

again!!!!!!

A week goes by.

So, it turns I hadn't remembered to cancel one of the other rheumy appts in

another city after all. The appt was today, and since I was disappointed in the

first rheumy, I thought I'd take it. This one was highly recommended--by another

physician.

They scheduled 30 min for a new patient. She must have spent 10-12 with me, and

also had to leave for a quick phone call during this time.

I complained about the fatigue, and soreness as succinctly as I could,

explaining the big difference between how i am: now and then, and how I've seen

so many doctors and am not getting better and I fear I will feel like shit

everyday of my life going forward, blah blah. I didn't whine, was patient and

matter of fact, and didn't impose on her time. I told her I maxed out my

prescription coverage last year trying everything prescribed to me to feel

better.

She did a tender point exam. I don't have any. She said therefore " you don't

have fibro. Let's take blood and see if you have anything rheumatological. "

(Evidently, my old internist HADN'T done rheumatological blood tests, and the

first rheumy in the same medical practice didn't recommend them for me when I

saw her last week. ....)

I just kind of looked at this second rheumy. I said I thought the tender point

criteria was going by the wayside. She said no. I said what about this new

viselike apparatus that has been invisibly installed in my back that makes me

sore, which is brand new in the past few years? She said, Do I exercise? She

said I should exercise. I said the fatigue is stopping me from living my life,

though the soreness is just that, no pain. But I said I've heard if I don't

take care of it, it will get worse and not go away.

She took blood. Lots!!

Back at my car, I remembered one of you said to do an orthostatic intolerance

test (because I feel better when I lay down.).

I went back in to the office to ask. The Dr said this is something my primary

physician should do. (Thanks-i just saw him yesterday, and my health insurance

expires today! Whatever. . )

What a waste of time. My life has dropped to nothing over the past two years,

and this is all I get. A 10 min chat, take my blood, and send me on my way. I

implied disappointment and said, what is next? She implied I should slow down

and said, " well this is the first time I am seeing you. "

Yea, well I spent two hours of precious time filling out your stupid forms,

gathering old blood tests, and records! And seriously, MONTHS to get an appt to

only take my blood?! Why couldnt I get it done first and she'd have something

to look at and discuss after I waited this long for an appt with her? (I know

it doesn't work like this, but it should! And I know she doesn't know this is

my last day of health insurance, so she doesn't know there is any reason for me

to be impatient.)

But really, overall, I'd say both my rheumy appts were big, useless wastes of

time!

And I'm infuriated with how all these specialists waste my time and make me have

a zillion appts, for 10 min a shot. I drive 3 hrs RT for many of these, ad

sometimes have to stay overnight. They take a toll on me and they are useless.

.

Olnisa.

[Guest guest]

Olinsa, Sorry about all youve gone through. To diagnose Fibro,

the 18 trigger points are the most important. You have to be “tender†or

pain in 11 out of the 18 to be diagnosed with fibro. I can send you a picture

of the anatomy, showing where these are. These are the places where the

“pain†usually starts from. I have orthostatic intolerance, and, heres an

easy way you can see if you have it by taking your blood pressure yourself. Its

simple. My cardiologist and primary care doctor did it in the office this way.

You take the pressure while standing up, laying down, then, sitting up, with 5

minutes rest between tests. Do not cross your legs or your arms. That changes

the results. If your blood pressure, (the upper number) is at least 20 points

difference higher or lower from the others, you have it. Also, see if you have

low blood pressure from any of these. I’m not able to sit up, or stand in one

place for more than minutes, without getting ill. After this test, then you can

ask for the tilt table test, usually done by the cardiologist. I take

fludrocort for this, which is also used in CFS. Go to

www.orthostaticintolerance.about.com, or www.chronicfatiguesyndrome.about.com.

There is a huge amount of info there, and also on Fibromyalgia, and the

differences. Contact me if I can help at all. Sincerely, Jill K

From: Olnisa

Subject: What the? (rheumy rant)

So I waited months to get in with a rheumy. For a new patient appt. And kept

calling for cancellations.

I tried three different rheumy's, to see who i could get in soonest with, via

cancellations. I cancelled two, once one appt won the race.

So I went in for this appt. She looked young and new. Extremely nice, and gentle

sounding. Couple yrs out of residency I would guess.

She looked at the records from 10 doctors I went to before her in the same

medical center--other specialists (ent, pulmos) and my internist. She listened

to me complain about my fatigue and soreness. (Soreness, I don't have pain.).

She said, " Like the other doctors said, you have fibromyalgia. " . Huh. I thought

they said I *probably* have fibro. I thought the rhemy's had the final word on

the matter. That's why I was here! She didn't take any more blood--only looked

at what the internist had done. She didn't do an exam. No orthostatic

intolerance test. No nothing. He said my symptoms won't go away--from what she

knows. (sounded like " from what she reads... " ). She gave me some info on two

clinical trials--which I am not interested in! She calmed me and said one isn't

for a new med, it's behavioral--which I could handle--but it was too far for me

to drive and get too regularly--she must have forgotten about my primary sleep

problems.

[Guest guest]

Olinsa, Sorry about all youve gone through. To diagnose Fibro,

the 18 trigger points are the most important. You have to be “tender†or

pain in 11 out of the 18 to be diagnosed with fibro. I can send you a picture

of the anatomy, showing where these are. These are the places where the

“pain†usually starts from. I have orthostatic intolerance, and, heres an

easy way you can see if you have it by taking your blood pressure yourself. Its

simple. My cardiologist and primary care doctor did it in the office this way.

You take the pressure while standing up, laying down, then, sitting up, with 5

minutes rest between tests. Do not cross your legs or your arms. That changes

the results. If your blood pressure, (the upper number) is at least 20 points

difference higher or lower from the others, you have it. Also, see if you have

low blood pressure from any of these. I’m not able to sit up, or stand in one

place for more than minutes, without getting ill. After this test, then you can

ask for the tilt table test, usually done by the cardiologist. I take

fludrocort for this, which is also used in CFS. Go to

www.orthostaticintolerance.about.com, or www.chronicfatiguesyndrome.about.com.

There is a huge amount of info there, and also on Fibromyalgia, and the

differences. Contact me if I can help at all. Sincerely, Jill K

From: Olnisa

Subject: What the? (rheumy rant)

So I waited months to get in with a rheumy. For a new patient appt. And kept

calling for cancellations.

I tried three different rheumy's, to see who i could get in soonest with, via

cancellations. I cancelled two, once one appt won the race.

So I went in for this appt. She looked young and new. Extremely nice, and gentle

sounding. Couple yrs out of residency I would guess.

She looked at the records from 10 doctors I went to before her in the same

medical center--other specialists (ent, pulmos) and my internist. She listened

to me complain about my fatigue and soreness. (Soreness, I don't have pain.).

She said, " Like the other doctors said, you have fibromyalgia. " . Huh. I thought

they said I *probably* have fibro. I thought the rhemy's had the final word on

the matter. That's why I was here! She didn't take any more blood--only looked

at what the internist had done. She didn't do an exam. No orthostatic

intolerance test. No nothing. He said my symptoms won't go away--from what she

knows. (sounded like " from what she reads... " ). She gave me some info on two

clinical trials--which I am not interested in! She calmed me and said one isn't

for a new med, it's behavioral--which I could handle--but it was too far for me

to drive and get too regularly--she must have forgotten about my primary sleep

problems.