Rheumy follow-up

[Guest guest]

Hi all! Coming out of lurkdom to give you an update. Sorry I haven;t

been posting, but have just been in too much pain lately.

Had my follow-up appt with the new rheumy today. Am exhausted and

hurting like crazy, but still kind of.... excited? Happy? Surprised?

Stunned? Gee - don;t know how to describe it. Let's just say the

appointment went *very* well.

She said again that I have the worst case of FMS that she has

ever see or heard of. (And she is *the* FMS specialist in the

Pittsburgh area!) And she said she is " very frightened " by how fast

I am deteriorating. She is such a sweet lady. Tiny little thing -

maybe 5 feet tall and less than 100 lbs. Grey hair in a bun. Looks

like she should be sitting in a rocker somewhere, quilting - you

know?

Anyway - she really does seem to know her stuff. She put me

on Paxil to help me sleep. But she said her main goal was to control

the pain. So she told me to go off the neurontin - decreasing by

100mg.wk. And after 3 weeks, I am to start using Duregesic patches.

(Fentanyl) She's starting them low, but said she figures I'll end up

on the 100's soon. Good thing we have good insurance, as they run

about $30 each, or so it says on the web. I am to keep taking the

Vicodin every 4 hours along with the patches. And she said I may need

something stronger. Guess she could see I was hurting, huh?

By the way - I seem to remember something about needing to avoid

certain foods when taking Paxil. Maybe sausage, aged cheeses, other

things? Anyone remember this? Or maybe it was some other med?

She also wrote a scrip for me to have guided water therapy with a

therapist twice a week. She said I need to do it that way for now, as

she doesn't think I could handle the therapy classes yet.

So anyway - she says her long-term goal is to get me so that I

can get up and dress myself, stand for a few minutes now and then,

and maybe walk short distances around the house. And maybe - just

maybe - be able to cook a simple meal once or twice a week. BUT -

she said it will take at least 2 to 3 *years* for me to get to that

stage - if ever!

She told me to cancel *all* comittments. I told her I don't

*have* any, but then she reminded me that at the last appointment I

had mentioned planning to preach (nothing else - just do the sermon)

from my wheelchair in a couple of weeks. She said I can't even do

that. That I have to cut back *totally* because of the FMS and PPS.

Geeze! Doesn't seem to me like I have been *doing* anything to cut

back on!

Oh yeah, I have orders to spend at least one hour every day

resting, with my eyes shut, and listening to my relaxation CD's and

meditating. She said to consider that hour of meditation as my " job. "

Told me to set a specific time and meditate at the same time every

day, with no excuses!

So that's where she left it. Of course, if I have any probs

with the patch, she will try something else. She also told me she

won't make me come back in till Spring, if all goes well, because she

knows it's such an ordeal to get there and all. But she said she

lives right by the hospital, and if I should need her - get this -

she said " I'll be here. "

I tell ya - I almost fainted when she said that. After so many

years of cold, calloused doctors, it was a shock to have her say

that. I looked for wings when she turned to leave, but they didn't

show. <G> I only wish I could share her with you!

Well - that's my story! Isn't it wonderful to know there really

*are* still some doctors who still believe in the Hippocratic Oath?

Praying you all find a doctor with with a halo too!!!

Hugs & prayers -

..

" Lord, we ask not that you move the mountains,

but that You give us the strength to climb. "

[Guest guest]

it sure sounds like you lucked out with that Doc. That is great. Now just

remember to listen to what she told you to do. If you find out about the foods

and paxil please pass that on to me I take Paxil and it would be helpful if I

knew to avoid things if I am supposed to

Angie

[Guest guest]

how great you found a good doctor. That I think is half the

battle. Yippee!!

I am on fentanyl too. You will love it eventually. Be prepared though,

the first week or so, you will feel drugged. It is pretty powerful. But

once you adjust, there is just nothing like it that I have used. I still

use roxycodone for breakthrough pain, and percocet every four hours, but

fentanyl kept me from going to the morphine pump.

She sounds wonderful...why can't they all be like that????

Happy you found her, but still sad your Fm is so bad.

Lyn

~~~~~~~He who laughs,lasts~~~~~~~~

Homepage:http://home.talkcity.com/spiritcir/lynmari/index.html

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[Guest guest]

Greetings Poppette: Good to hear you have finally found someone who can

help. Have you considered that when you tell us about this doctor you are

doing something good? Why? Because this gives many of us hope to keep

searching! If even one of us can find any some relief and help then others

will possibly keep searching.

Peace

D.

[Guest guest]

,

I haven't been posting much (can't sit too long at the puter) and they have

started me on the Neurontin 2 1/2 weeks ago, now I am taking 2400 mgs. daily,

along with occasional hydromorphone (highly addictive) and take darvocets and

robaxin 4x day.

I am writing this as to why you were taking it, and what effects it had on

you. I am having tremendous sciatica pain and am losing all control of my

right leg very quickly. I have been walking with a cane for 1 1/2 years

(started with a ruptured disc, now FMS and who knows) they have finally done

an MRI (all *normal*) and ordered nerve tests and I am seeing a new

Neurosurgeon on Tues. am (please all cross your fingers for me, this is

absolutely becoming UNBEARABLE) the meds just don't cut it except to keep me

from having to go to the ER every other day! I get bad muscle spasms that get

uncontrollable at various times. Also live in the basement of a house

(restroom upstairs) and have now got a porta-potty and a walker, I am only 40

years old, always went from dawn to late night before all this s%$* happened

to me!

Here's a *3 cheers* for you finding a wonderful doctor, I am hoping this will

at least be a start for me, and that all of us may find compassionate and

learned doctors so we may have the painfree days that we all long for.

Enuf of my ranting, thanks all for letting me get it off my chest, it has been

building into some kind of rage that is totally foreign to my caregiver

personality! Cheryl V. :>)

[Guest guest]

Cheryl rant away...that's what we are here for. You have to let it out

somewhere.Someone said awhile back that you can't get over the rage

until you go through it. So true.

You will be in my prayers.

Lyn

~~~~~~~He who laughs,lasts~~~~~~~~

Homepage:http://home.talkcity.com/spiritcir/lynmari/index.html

Join the arthritis

warriors--http://www.onelist.com/subscribe.cgi/rheumathritis

Join-DachsieHeaven:http://www.onelist.com/subscribe.cgi/DachsieHeaven

Dachsie B'day Page: http://members.tripod.com/~Lynmari/DACHSHUND

[Guest guest]

,

It sounds like you have found a FABULOUS Rheumy! All the things she's doing

and recommending you do should help you with the FMS. I'm thrilled to hear

of another Dr. taking a whole body approach to this disease. She's treating

you for the pain, and quite well it sounds like, and not ignoring all the

other things that are going on with your body/mind that contribute to the

ways we can deal with FMS. The best of luck to you and hang on to that Dr.!

take care,

Ruthie

===========================

Ruthie Cunliffe K2ZQ

ruthie@...

http://www.cunliffegroup.com/ruthie/

Oh, no! Not ANOTHER learning experience!

[Guest guest]

Any suggestions on how to get through it so I can overcome it?

Angie

[Guest guest]

Hi Cheryl,

If your ruptured disk is sufficiently bad to cause the sciatica you

describe, they should have been able to catch it with the MRI (THEY = the

technicians & Radiologist) There are several other tests (such as myelogram &

CAT-scan) that can be used, and you need to discuss this with your doctor.

Consulting a neurologist & neurosurgeon wouldn't be a bad idea.

Although MRI's are given by highly trained techs & docs, yours just

doesn't add up. There is damage somewhere in your lumbar spine, by the symptoms

you describe. The pain & symptoms can be disproportionate to the damage, but

the MRI is very sensitive, including soft tissue

Also, I suggest you talk directly to the Radiologist who read your MRI

films & made your diagnostic report. He/she may have some suggestions, or

possibly want to do additional films, based on the symptoms.

Don't back off on this. It is disappointing. Please let us know what

happens!

Ken

At 03:35 AM 10/17/98 -0400, you wrote:

>From: Bobbi99932@...

>

>,

>I haven't been posting much (can't sit too long at the puter) and they have

>started me on the Neurontin 2 1/2 weeks ago, now I am taking 2400 mgs. daily,

>along with occasional hydromorphone (highly addictive) and take darvocets and

>robaxin 4x day.

>

>I am writing this as to why you were taking it, and what effects it had on

>you. I am having tremendous sciatica pain and am losing all control of my

>right leg very quickly. I have been walking with a cane for 1 1/2 years

>(started with a ruptured disc, now FMS and who knows) they have finally done

>an MRI (all *normal*) and ordered nerve tests and I am seeing a new

>Neurosurgeon on Tues. am (please all cross your fingers for me, this is

>absolutely becoming UNBEARABLE) the meds just don't cut it except to keep me

>from having to go to the ER every other day! I get bad muscle spasms that get

>uncontrollable at various times. Also live in the basement of a house

>(restroom upstairs) and have now got a porta-potty and a walker, I am only 40

>years old, always went from dawn to late night before all this s%$* happened

>to me!

>

>Here's a *3 cheers* for you finding a wonderful doctor, I am hoping this will

>at least be a start for me, and that all of us may find compassionate and

>learned doctors so we may have the painfree days that we all long for.

>

>Enuf of my ranting, thanks all for letting me get it off my chest, it has been

>building into some kind of rage that is totally foreign to my caregiver

>personality! Cheryl V. :>)

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi ,

I'm really glad you found a caring doctor!! I have been using the patches for

about 4 months now and have found them to be really great for me.

It's the only thing I have found that I don't experience that roller coaster

ride with pain pills. I also use Lortab 10 for breakthru pain.

My insurance company finally did cover the patches, but it has taken 4 months

for them to give me a full months worth of patches. I was having to go in

every 2 weeks to get another script. It actually was costing them more money

doing it that way because they had to pay for an office visit each time.

Sometimes I wonder about these ins. companies. Some ins. co.

makes you go thru other pain meds. befor they will cover something like the

patches. Mine did but I had all ready tried just about every thing.

I'm so glad you are going to finally get some help with the pain. I too

have FM and MPS as.

Kathleen