Re: FM, Lymph massage, and Ultracet - Judi

[Guest guest]

Gosh Judi,

What a story. Do you have a way to get a verbal referral from someone(s)

you trust in the medical community? I know it's no fun hunting around for a

physician, but not liking/trusting your current doctor(s) leaves you in a

bad place. I have to agree with you cousin, some of your PT does sound

pretty hokey!

What a good sport you have been to go along with it so far.

I travel 2 1/2 hours each way to see my rheumatologist. He was a referral

from a trusted friend in the medical field. I can't say he's the best thing

since sliced bread; there have been a couple of blips along the way that

have had me questioning whether we will have a long term relationship.

However, he has gotten me to a point where I mainly feel good. The initial

exam went really well, and his treatment so far appears very competent.

If you could get some referrals from sources you trust, at least you

wouldn't be blindly picking names out of a phone book. Maybe someone on the

list has some suggestions or knowledge of good rheumatologists in your area?

How frustrating for you with all on your plate right now. Strange about the

ultraset. Are you having similar problems with nsaids or other similar meds?

By the way, I don't have a lot of swelling either. The upper portion of my

left hand closest to my thumb was the only visible swelling I've ever had.

Several of my fingers are somewhat disfigured. No one has ever seemed very

alarmed or sympathetic regarding my fingers. Well, it's my hands, not

their's, afterall.

Anyway, there were many other signs that the rheumatologist used to come up

with his diagnosis. The large number of painful joints, amount and length

of stiffness in the morning, weakness in my hands, inability to do so many

things (open bottles, turn the key in the car ignition, lift and open the

milk carton, sit for any length of time without pain, tremendous effort to

drive the car any long distances, etc. etc. etc.) X-rays were all normal.

Bone scan showed inflammation everywhere. SED rate normal, RA factor normal,

C Reactive Protein high.

What tests has you rheumatologist done? Any or all of the above?

I know your frustrated, but it sounds like you need to keep looking for a

doctor who " gets it " . Good luck!

Suzanne

[ ] FM, Lymph massage, and Ultracet

> Hello group,

>

> This is a very tired and unhappy lady here. Just to backtrack, the

> rheumy diagnosed FM based on my blood tests, and the lack of serious

> visible swelling in my hands (that was all she looked at, though she

> did ask me to walk so she could see me walk--no comment there!) She

> sent me to a PT, who disagreed with the fibro diagnosis because I

> have no muscle pains and no cramps in muscles, and sent me to a

> different pt. This guy asked me to raise my arms, then dipped my

> hands in paraffin. He proceeded to give me a packet of papers, one

> of which is a lymph massage I'm supposed to do once a day to " clear

> my system of toxins " and this involves thumping around my wishbone in

> between massaging from my breasts down to my thighs and rotating

> ankles and wrists. He also gave me a list of phrases that if I've

> ever used them or heard them said to or about me, to circle them--

> stuff like " my feet are killing me " , " pain in the butt " , and " I'm

> sorry. " That these are expressions that, along with my poor posture,

> have contributed to my having FM. I go back to see him Monday, and

> frankly I'm tempted to call and cancel.

>

> I've been taking Ultracet tabs 3 times a day with meals (one tab) and

> 2 tabs at bedtime. They really have not been helping the pain

> (which, by the way, is confined to most of my joints only, but

> especially hands, elbows, hips, and knees) and definitely not helping

> me sleep since the pain wakes me up (not my " depression " as the

> rheumy surmised.) But Christmas morning I took my 1st dose of

> Ultracet, and it came violently up almost immediately. I waited a

> couple of hours, then ate some eggs and bacon at my daughter's, took

> another Ultracet, and promptly threw up again. I didn't take any

> more, and haven't since then. I don't see the rheumy until Jan. 23,

> but I am going to call her Monday (her office has been closed all

> week.)

>

> I hate being in the middle of conflicting diagnoses, and my cousin

> who is a nurse in Calif. says that the therapy sounds pretty hokey,

> along with the rheumy's quick diagnosis and treatment. In the mean

> time, I am back where I started months ago, no better and more

> confused. I have to start working Monday to cover my daughter's job

> while she goes on bedrest, so I have to work Mon-Fri 9-3. I could

> look for another rheumy in Indianapolis, an hour and a half drive, or

> in Cincinnati, an hour drive, but most doctors seem to close at 3 or

> 4. Rev. Fred would be happy to let me off, but I don't want to start

> thinking about multiple visits to different doctors right now. talk

> about stress!

>

> sorry this is a long ramble, but I just had to talk to someone. Ron

> was delighted that the 2nd PT thought it was something simple, and

> even said he was glad I " wasn't really sick. " So what does this say

> to the rest of the world about FM (or whatever the heck I've got!)

>

> I hope everyone had a good Christmas, and any suggestions you have

> would be warmly welcome ('specially the warm part--it's cold here!)

>

> Hugs to you all,

> Judi

>

>

>