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Re: Unusual flare or not?

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Grp:

I hurt in the pelvic area/butt bone. I think I hurt everywhere- throat tendons, collar bone and upper arms--- its getting more weird as time goes on (had RA 6 years now) I have much stiffness in muscles ( I sleep with ice paks everywhere) and the doc said RA gets into muscles as much as joints. I am always sore to the touch everywhere. Guess this is part of the RA also.

Carol*

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on 10/27/01 10:35 AM, Mark Holmes wrote:

> I'm curious as to whether some of you when you're flaring develop

> pelvic pain? Since I have gone off of metho, I'm in the flare of all

> flares and even the bones in my butt hurt! When I bend over to pick

> up something, it's excruciating in those bones or if I sit on a hard

> chair - impossible.

I used to get it with ReA: you're sounding like you need to switch

diagnosis? Have you been checked for HLA B27? Do you have heel pain? Iritis?

I used to walk along and feel like I was being shot in the tail bone. Also

pubic synthesis. Glad I don't have that any more.

Jean

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> I'm curious as to whether some of you when you're flaring develop

> pelvic pain? Since I have gone off of metho, I'm in the flare of all

> flares and even the bones in my butt hurt! When I bend over to pick

> up something, it's excruciating in those bones or if I sit on a hard

> chair - impossible.

I get that sometimes too. ( and had the pubic symphisis pain in the past

too, Jean) Hurt on the tailbone, the lower edge of the pelvic bone (the

" sitting bone " ) and on the side of the hip also. I had a a lot of flaring

there when I tried doxy for several months. The arthritis seems to keep

skipping around in my body over time. Sometimes it is neck, hands and feet,

sometimes back and pelvic area, and right now it is primarily tendons.

I had a lot of pelvic pain after a miscarriage once, which I am now sure was

the arthritis. My hip was gelling and giving out on me at the same time and

I had the awful fatigue I have come to know is part of RA, GI troubles and

the low fevers. But I did not get a diagnosis at that time, instead they

ruled it as possibly related to the miscarriage--some elusive low-grade

infection--and was treated with antibiotics, some I don't recall, and

eventually flagyl. After a month of that I got quite a bit better, well

enough to go back to work. They did some pretty comprehensive STD screens

at the time, which all came back negative, so if it was ReA I don't think it

was any of the usual pathogens they say cause ReA. And in any case you

would expect to have a flare after a pregnancy if it was RA. But sometimes

I wonder as I seem to have symptoms of both. Boy do I wish sometimes I had

the means to go to someone like Dr. Franco who could sort this all

out....then at other times I just feel like it doesn't matter what they call

it, since I feel I am on the right track with the treatment and have a lot

of my energy back. I haven't had much time to think about it anyway because

we are still struggling with the flu virus from hell here.

Didn't mean to get so off track here but just to say that it is not always

so clear cut. I think my diagnossi was made as RA because back when we were

puzzling it out I had +RF and hands and feet were the targets. But it really

is more widespread. My doc (GP) has always said that RA can cause

inflammation in virtually any part of the body once it gets rolling. Liz

G.

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on 10/27/01 12:19 PM, Liz G. wrote:

> Didn't mean to get so off track here but just to say that it is not always

> so clear cut. I think my diagnossi was made as RA because back when we were

> puzzling it out I had +RF and hands and feet were the targets. But it really

> is more widespread. My doc (GP) has always said that RA can cause

> inflammation in virtually any part of the body once it gets rolling.

I think a lot of our situations are not so clear-cut as the docs would like

to make them: to me this just means they don't understand these diseases as

well as they would like to think they do.

I started with swollen ankles and knees and positive ANA, they thought it

would turn out to be lupus, but didn't develop that way. When I started to

develop heel, hip and pelvic pain, they tested for HLA B27, but it was

negative.

I had diarrhea troubles, but not the recognition of an infectious cause, but

later did develop iritis. Most docs I've asked said the iritis is more

specific than HLA B27 for the group of spondylarthropathies as a whole, thus

my diagnosis of ReA.

Actually, the information you sent on microscopic colitis is closer to my

presentation than anything else, but I don't really want to go through all

the diagnostics just to find out if that is a better diagnosis, as long as

my treatment is working.

I just don't think they know enough about the gray areas of the rheumatic

diseases to really determine my true diagnosis at this juncture. I don't

appreciate going through expensive, maybe invasive diagnostic procedures

just to get wildly varying opinions on what the results mean.

Fortunately, minocycline has helped me a good bit, even though I haven't

achieved remission.

Jean

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In a message dated 10/27/2001 7:36:07 AM Pacific Standard Time,

mholmes@... writes:

> I've just never had these bones hurt in a flare before, so was

> curious as to whether this was normal or abnormal.

I have my bones hurt in this last flare, I have a Herman erogonamic

chair and even though it is top of the line there is no cusion just a webbing

and it makes my butt hurt. My hips also hurt when I sleep so I feel I am just

going through another area being effected and it will go away. Do think

about selling the chair and buying one for several hundred dollars cheaper

that has a padded bottom cusion on it to see if that will help. I think part

of it also is since moving my walking has been cut way down. Fedlencrist

exercises also help . :-)

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Speaking of chairs, also make sure you have your chair seat adjusted so that

the seat is a little higher than you knees. I set my chair higher when I

was having bad trouble with knee tendons, and it helped the lower back and

hip area too, as the muscles are not so stretched across the back and hip

area if it is a couple of inches higher than the knee. Liz G.

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> Date: Sat, 27 Oct 2001 14:08:08 EDT

> From: HPUMOM1@...

> Subject: Re: Unusual flare or not?

>

> I hurt in the butt bone

Newly discovered skeletal extension?

:)

Couldn't resist!

Geoff

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